Helen. With the Heart.

So Hot Here

2011-08-05T17:52:00.000-05:00

It has been so hot here in Texas lately. We've had a run of over 100 degree days, that's true, but these past two weeks have been over 107 degrees. Shocking, right? Shocking to everyone who doesn't live in Texas, I suppose. I lived in New York for the first 36 years of my life, and it barely ever reached 100 degrees. And then, when it was hot, you sat in the shade. Not a lot of shade here in Texas. Its not like you'd think, with tumbleweeds and all, but there are significantly less trees here than in my former home in the Hudson Valley. And it is hard to keep your lawn green. Why would you want to keep your lawn green, Helen, if there is a drought on and 107 degree heat every stinking day? My homeowners' association. A joy of living in Texas, I suppose.

How does heat affect heart transplantees? Good question. For me, I get weaker. And when I get weaker, it brings back a time when before my transplant, when my lack of heart strength made me so weak that I couldn't walk, couldn't go up stairs, fainted in the hot subway on a regular basis. These thoughts depress me, as you might imagine. Of course, soon I will celebrate my nine year anniversary of my new heart, and that's a blessing unto itself. I'd be interesting if anyone could offer me a link to an article discussing fluctuating temperatures and transplantees. I have been unable to find one thus far.

Interestingly, and perhaps on another note, I received a newsletter from my New Program that talked about LVAD patients and summer vacations. The New Program encourages LVAD (and now, portable BiVAD) patients to take vacations, so long as they inform The Program ... and remove themselves from the waiting list while they are away. Okay, who in the right mind would take a vacation if you had the remove themselves from the waiting list? That just sounds absolutely ridiculous. Whose with me?

Bible Quote for Transplantees

2011-07-17T13:47:00.000-05:00

Today, being Sunday, seems like a fine time to share a very apropos Bible verse.

I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh.

Ezekiel 36:26 (NIV).

Thanks to my friend, and fellow HTP,Will for sharing this with me!

Tracheas

2011-07-08T10:48:00.001-05:00

Since I've stopped going on Facebook, I've collected a bunch of random thoughts for which I have no outlet. Like this one: "Dear Mr. Lexus Driver: You are so close to my back bumper, I can count the hairs in your nose." Or, "My blog is finally a success! I have my own anonymous, apocalyptic commentator! I call him Fred!" My Facebook detox aside, today reveals the world's first permanent artificial trachea transplant!

Macchiarini [the doctor performing the surgery] performed a similar procedure in 2008 in Barcelona. A patient named Claudia Castillo received a windpipe that had been removed from an organ donor and, over a period of weeks, cleared of all of its original cells, leaving just a matrix that could be coated with the patient's own stem cells. He has performed about 10 implantations using donor windpipes since then, he says.

In this case, Macchiarini says, researchers didn't have time to wait for a donor trachea and they didn't want to risk rejection.

He says he began by removing the patient's bone marrow and filtering out certain cells, called mononucleocytes. These cells, when treated with growth factors and other substances, morph into the cells that form the rings on the trachea. Then a team ... worked round-the-clock to produce a Y-shaped matrix that would replace the cancerous portion of the patient's windpipe and connect with his lungs.

Steve Sternberg, Patient Gets World's First Artificial Trachea, USA Today, July 8, 2011 (emphasis mine).

This is the point I'm trying to make here: Scientists can grow parts of the body now. First bladders, now tracheas. Could hearts, lungs, kidneys be far away? Hopefully not.

Facebook Obsession, Face Transplants, Buda Teens

2011-07-03T09:33:00.001-05:00

Recently, I gave up Facebook. It was becoming a huge time vacuum and with my kids home for the summer, I recognized the irresponsibility of Mom rummaging around friends' status reports for hours while her kids ran around with their hair on fire. That's an exaggeration. Their hair wasn't actually on fire, but you get my drift. In addition, I began to think my true personality wasn't coming through on Facebook. My sister, a psychologist, pointed out the problem with social networks: You don't have the person there, you can't see her face, hear the inflections in her voice, notice her facial expressions. Quite frankly, my wry humor, my cynicism, my innate curiosity just wasn't translating (lol!). I spent more time putting out unintentional friendship fires than having fun reconnecting. So now I'm on a Facebook fast. Like a Lenten thing. I tried to deactivate my account (which made more than one friend send me screaming emails about how in the world could you defriend me? Sigh...). I realized the all-consuming tentacles of Facebook. It. Is. EVERYWHERE. So I'm on, but I don't post or visit. That being said, let me continue:

Texas is so dry, the catfish are getting fleas.
I baked a delicious lemon pudding cake last night.
Sissy goes to sleepaway camp next week, my baby is all grown up!
We had the new dog shaved. He looks like a tempura shrimp.

Ah, that felt good . LOL. Now, onto transplant issues.

Remember the chimp attack lady? Two years ago Charla Nash visited a friend who kept a chimpanzee as a pet. For whatever reason, the chimp went ballistic and ripped off her lips, nose, and hands and blinded her. Absolutely horrific. She became good friends with Oprah Winfrey and greatly inspired Meredith Viera. Nash received a face and hand transplant in June.

“Transplanting a face and hands together is basically an unparalleled quest,” [Dr.] Pomahac, Charla’s lead surgeon, told [Ann] Curry {of the Today show]. “The complexity, logistically and surgically, I think makes it the most challenging thing we can do these days....We took tissues from the donor that included the skin and underlying muscle of the entire face,” he said. “But we also took the nerves that power it and provide sensation. And the upper palate. And the whole unit was transplanted on Charla.”

Linda Carroll, Chimp Attack Victim's Face 'Looks Fantastic' After Historic Transplant, MSNBC, June 10, 2011.

Ms. Nash will not look like her donor. She will look like herself, only a little different. Unfortunately, her transplanted hands did not take, a risk all transplantees run. Let's wish her luck.

Also, in local news, a fifteen year old from Buda, Texas, saved many lived through his parents' selfless gift of his organs. While crossing US 183 in Lockhart, a truck hit Jackson Norris. He died in Austin that night.

"We took him off life support around 9:30 when we did the donor paperwork," Rebecca [Norris's mother] said. "When we woke up Thursday morning, we had a message from the donor association, that he had saved seven lives the previous night."

Medical staff told the Norris family that Jackson's bone, tissue and blood could potentially help give 150 other people hope.

"We do hope that the recipients will send a letter and know how there lives were affected. We would love to meet them some day," Rebecca said as tears rolled down her cheek. "Whoever has his heart, we would love to meet because he was so loving, and kind and generous, and happy and funny. And whoever has his heart, they're very blessed, very blessed."

http://www.kxan.com/dpp/community/buda-teen-saves-lives-after-death

I know, if you are reading this, your heart goes out to this family. For me,as the recipient of thirteen years old's heart, I feel a strong affinity. There are no words to convey the gratitude I feel, and I'm sure the seven people who received Jackson's organ feel. ScissorsGirl, I hope you got that one.

What is Mucormycosis? Another Trial for Joplin

2011-06-11T08:35:00.000-05:00

When I first got my transplant, almost nine years ago now, I clearly remember them telling me not to be around construction. I remember that the hospital was in the middle of renovations and all the transplants would scurry past the site, clutching their masks to their face. Even today, at my new hospital, where they are undergoing massive renovations, we all have to keep our masks on in the transplant office. I think I finally understand the problem.

The recent tornadoes in Joplin, Missouri have touched a nerve in almost everyone who saw the first newscaster start weeping at the devastation. I've never been to Joplin, and I don't know anyone who lives there, but I think anyone with half a heart (no transplant humor there, please) can be moved by the absolute destruction of regular people lives. With the death toll already at 151, another trial that actually touches on an HTP risk, hits Joplin: Mucormycosis.

What the heck is that? It's a rare fungal infection that is now hitting the people of Joplin.

Eight tornado victims have fallen ill from the mysterious infection, and each had “multiple injuries and secondary wound infections,” said Jacqueline Lapine, a spokeswoman for the Missouri Department of Health and Senior Services. ... The fungus that causes the infection, which is believed to be mucormycosis, is most commonly found in soil and wood, according to the Centers for Disease Control and Prevention, which is studying samples from the eight Joplin patients. “It is a very aggressive and severe infection,” said Dr. Benjamin Park, chief of the epidemiology team in the C.D.C.’s Mycotic Diseases Branch. “It is also very rare.”

Timothy Williams, Mucormycosis Sickens Joplin, N.Y.T., June 10, 2011.

So this fungus appears in soil and wood. When the tornado disturbed the town's buildings, it also released whatever was in the wood and land. You're probably thinking "Yeah, so?" If you are immunosuppressed, say, you have a transplant, here's the rub:

Mucormycosis enters the body either via a puncture wound or when a victim breathes in its mold spores, officials said. Those who have weakened immune systems have a mortality rate as high as 90 percent. Other people at risk include those with diabetes or cancer and burn victims.

Id.

Wait, let's say that again for the people in the cheap seats:

Those who have weakened immune systems have a mortality rate as high as 90 percent.

Id. Cue the foreboding music. Be safe out there Joplin, and all transplantees as you live your daily lives.

Holy Sh*^%, Man Cured of HIV Through a TRANSPLANT!!!

2011-06-05T15:21:00.000-05:00

Sound the bells and whistles, people, this is big news! Really, really big news. For those of us who lived through the 1980s, when HIV and AIDS was just starting out, to those of close to some of the 30 million people AIDS has claimed since it was first discovered, a cure for HIV is MONSTROUSLY GOOD NEWS. And to have it tied to transplantation, hot damn! I'm beside myself.

Timothy Ray Brown suffered from both leukemia and HIV when he received a bone marrow stem cell transplant in Berlin, Germany in 2007. The transplant came from a man who was immune to HIV, which scientists say about 1 percent of Caucasians are. (According to San Francisco's CBS affiliate, the trait may be passed down from ancestors who became immune to the plague centuries ago. This Wired story says it was more likely passed down from people who became immune to a smallpox-like disease.)
What happened next has stunned the dozens of scientists who are closely monitoring Brown: His HIV went away.

Liz Brown, First Man, Functionally Cured of HIV, Yahoo News, http://news.yahoo.com/s/yblog_thelookout/20110603/us_yblog_thelookout/first-man-functionally-cured-of-hiv, May 31, 2011 (emphasis mine).

A bone marrow transplant cured HIV in a man known as "the Berlin Patient."

So Much Transplant News, so Little Time

2011-06-04T07:22:00.002-05:00

The Today show (my everyday news fix) recently had a look back at the baby born to give her older sister a bone marrow transplant. I remember that case like it was yesterday, but it happened twenty years ago. Oh yeah, I'm aging. (And for any HTP, that's a GOOD thing!) Today, Anissa Ayala is leukemia free and her younger sister Marissa, an "outgoing college senior," says she's "happy to belong to this family." Of course, the Ayala case gave birth to a lot of controversy, with regard to informed consent (how can a newborn give consent) and the issue of "baby farming" (see Jodi Picoult's novel, My Sister's Keeper) {shiver}.

For her part, Marissa has never been fazed by critics who question why she came into this world. “They don’t know my family, and they probably don’t put themselves in our shoes and ask themselves, ‘Would I do this for my child?’ ” she told Vieira.

Michael Inbar, Born to Save her Sister's Life, MSNBC, http://today.msnbc.msn.com/id/43265160

To tell you the truth, I don't agree with Abe and Mary Ayala's decision, but they looked everywhere for a bone marrow transplant for their 16-year-old daughter, to no avail. They exhausted every avenue. And, the resulting controversy over Marissa's conception encouraged a HUNDRED THOUSAND PEOPLE to register as marrow donors. Wow. Even the comments below the story tell of a guy who registered due to this story and was just contacted to be a donor. What ripples this pebble had!

In other news, a 13 year old Arizona boy was killed when his heart stopped suddenly after being hit in the chest with a pitch as he tried to bunt. It's a rare condition called "commotio cortis." Shocking. Lets keep the family of Hayden Walton in our thoughts and prayers.

Happy Mother's Day! (And Welcome Back!)

2011-05-08T09:43:00.001-05:00

Hi everyone! I realize that I have been MIA for about four months. And I know, when an HTP goes silent, her friends start to worry. I have had many people email me essentially saying, "hey, um, you still alive?" I want to thank you for your concern and yes, indeed I am alive! I haven't even been sick, which is a fabulous thing for an HTP to say. My absence occurred because my father became very, very ill during the holiday season. He ultimately passed away on March 24. If you have been following my blog, you know that last May, my dad, who asked me not to air his business on the Internet, was diagnosed with terminal prostate-turned-bone cancer. His doctor gave him less than a year to live. He made it ten months. His death left me ... unmoored. We were very close. But I know he wanted me to move forward and that is what I am doing.

I want to wish everyone out there a Happy Mother's Day, especially the transplantees out there. It is not easy to either adopt or get pregnant after a heart transplant (and in my opinion, its not easy to mother with a new heart either, as I am sure one day my kids will give me a heart attack, but really, isn't that all mothers?).

Pregnancy after cardiac transplantation has generally been discouraged by most heart transplantation centers. The potential risks to the prospective mother and concerns regarding maternal longevity and possible teratogenic effects from immunosuppressive drugs have been the primary reasons for this recommendation. However, a more optimistic view of pregnancy outcomes in cardiac transplant recipients is evolving

The first woman to become pregnant after a heart transplant was reported in 1988; a few dozen of these pregnancies have been described subsequently. The number of female heart transplant recipients of childbearing age has escalated due to both an overall increase in heart transplantation in adults and to an aging pediatric heart transplant population.

Michael R. Foley, Pregnancy After Cardiac Transplantation, UpDate 19.1, http://www.uptodate.com/contents/pregnancy-after-cardiac-transplantation (footnotes omitted).

Yes, my doctors advised me to never have children. That was before the transplant, yes, but even after, my doctor white-knuckled her chair as she asked if I really, really, absolutely wanted to try to get pregnant. She looked a little too relieved when I said no. LOL. I am blessed to be the mother of two wonderful children now, both adopted. Love you Sissy and Buddy!

In the news, the Kentucky Derby happened yesterday. For those of you who didn't watch, one of the horses -- Mucho Macho Man -- was trained by an HTP. Unfortunately, Mucho Macho came in third, but you keep training, Kathy Ritvo! You make us proud sister!

Happy New Year

2011-01-16T10:30:00.007-06:00

I know, I know, I'm about two weeks late here. But life is like that, things come up. The Christmas season was wonderful for my family -- at least for the four of us here is Texas -- we managed to take a two day trip to Glen Rose, Texas and saw real dinosaur tracks. For a girl who grew up at New York City's Museum of Natural History, I was very moved. My children and I also participated in the age old tradition of attending the movies on Christmas Day. My Jewish friends always told me of this mysterious practice -- complete with a dinner of Chinese food -- but being a Catholic, I never had the chance to partake. It was a lot of fun, I must say. The movie theater: PACKED.

So the world of transplantation has had some huge news lately, for example, Tracey Morgan of 30 Rock received a kidney transplant over the holiday season. Good luck to him in his recuperation. And today, word got out that that Christina Taylor Green, the 9-year-old victim of the Arizona shooting spree, became an organ donor. I've been very affected by the news of that shooting, and poor little Cristina and the other victims, among them a federal judge who was just out doing his damn grocery shopping, and a social worker who, really, was just trying to make the world a better place, but this underscores the basic tenet of transplantation: Out of tragedy can come a ray of hope.

Hopefully, 2011 holds a book for me. I've always wanted to author a book, but I keep getting stuck. This is the year. Over the holidays, I was struck by the idea that maybe I missed my opportunity (thus plunging me into a deep depression, of course. LOL). I mean, I'm older than most new authors, is anyone going to care what I have to say? I don't know, but my time on this earth is limited. I'm not going out without achieving this dream. Wish me luck.

NYC Has Some Brass Ones, Let Me Tell You.

2010-12-13T15:42:00.000-06:00

You have to have a thick skin to live in NYC. If not, the City will eat you alive. I've seen it, many, many times, and it isn't pretty. Relating this phenomenon to organ donation happened today. Recently, NYC realized that 7800 residents need organs. Six hundred and eighty two of them get an organ each year. (Um, yes, I thank my lucky stars I'm one of the few). As I've spoken about before, hundreds of people die waiting. And so, home to many creative and assertive people, NYC has come up with a plan that only NYC can come up with.

To try to improve those numbers, New York City is starting a pilot program in which, for the next five months, an organ-recovery team will trail ambulances responding to 911 calls, ready to leap in if the patient dies and is a viable donor. It’s a bold experiment: no other American city has even tried it. Yet officials have already warned that the program, financed with a $1.5 million grant, might not yield a single kidney.

Ariel Kardinier, Organ Donation, Let the Market Rule?, N.Y.T., Dec. 10, 2010.

I anxiously await the outcomes of that program because, to me, it just sounds ... pretty ballsy. Read the whole article: http://www.nytimes.com/2010/12/12/nyregion/12critic.html?_r=1&ref=health

The article goes on to discuss the idea of selling organs on the free market and how "it couldn't possibly be open to corruption." We've also discussed this idea here before. Even though I think this is eventually where we will be headed as a society, I think that, of course, such a system is open to corruptions and of course it will muscle with the poor, middle class, and even working upper class out of the equation. If anyone reading this supports the selling of organs, it will only take one dying relative or friend and the lack of a few hundred thousand dollars to change your mind.

Kidney Swap Does Well

2010-12-09T14:23:00.000-06:00

Hey y'all. I haven't much felt like writing lately. With Christmas being here, I want to focus as much as I can on my kids and creating a wonderland of joy for them this holiday season. Ha ha, just kidding. Actually, I've been sick. It's been a crazy cold, but for all you immunosuppressed readers out there. you know a cold can drain you of energy and last weeeeeks. So here is an article on a kidney swap program that did really well. The story is very uplifting, so I encourage you all to take a moment and read it.

Thankful for...

2010-11-26T11:22:00.001-06:00

What are we thankful for today?

Chris Henry, the late Cincinnati Bengals player who lost his life on December 17, 2009. His mother donated his organs. As a result, four people get to celebrate Thanksgiving with their families.

"I think about Chris Henry every day," Elliot[, recipient of Henry's lungs] said. "And I think about his family." John Green, the trauma surgeon at Carolinas Medical Center where Henry was taken, said that he realized there wasn't much anyone could do for Henry, based on his injuries. Matthew Kinney, the family support coordinator for the hospital, went to be with Mrs. Glaspy in her time of grief. And soon after Henry was declared dead, Glaspy made the split-second, unthinkable decision that her son had not during his life - that he would be a donor for others. "It was a hard decision," Glaspy said. "But it was a decision that I would do again if I had to."

Doug Farrar, Four People Who are Very Thankful for Chris Henry, Yahoo, Nov. 25, 2010.
Our thoughts and prayers go out to you, Mrs. Glaspy. Thank you.

On a more personal level, I am thankful for my husband, Teacher Man. And not for all your classic reasons, but just because he's alive.  He is actually alive, sitting on the sofa in his bathrobe, with his bedhead, drinking his third cup of coffee.  Here is our story (and as my cousin Debbie says, you cannot make this stuff up):

We decided to go camping for Thanksgiving. We're all alone out here in Texas. This year, I just didn't feel like hosting friends or going out. It's been that kind of year. So we decided, let's take our pop-up camper and make a memory for our kids. We arrived on Wednesday, made camp, had a campfire, roasted marshmallows. Thanksgiving morning, we woke early. Teacher Man and the kids went fishing. I made pancakes and coffee. We played some Sorry. Buddy bailed about halfway through that game, but it was still fun. Then, Teacher Man went to gather wood for the fire. He planned to roast our turkey on the campfire. Shortly thereafter, Teacher Man returns. He's been stung by a scorpion hiding in the wood.

I'm 45 minutes from home. I've got the dog, the two kids, a camper, and a husband who is going into anaphylactic shock. It's Thanksgiving.  I'm from New York. What the hell do I know about scorpion bites?

Thankfully, the campsite had cellphone reception. I grab his Blackberry and find the closest urgent care center. We all pile in the car, dog included.  Halfway there, Teacher Man says he "can feel [him]self swallowing." Translation: His throat is closing up. His. Throat. Is. Closing. Up. I look at him. Bright red hives cover his face. His hand is three times its normal size. His other hand is swollen. He looks like a lobster. With lobster claws. We drive faster.

I do not panic. Unbidden, dark thoughts enter my mind. I consider life as an HTP raising my kids without my husband. Not pretty, even with the insurance money, which Teacher Man thoughtfully points out, is a heck of a lot more in the case of an accident. Say, a scorpion bite .  Really, in these situations, who gives a flying fig about money? I just don't want to go through this alone. This is not the plan. Teacher Man is supposed to outlive me. I start praying, not only for him but also for my dear friend Jim's wife, who unexpectedly passed away while Jim was recuperating from his heart transplant. They had kids. Live, Teacher Man, live. Stick to the plan, damn you, stick to the plan.

When we get to the urgent care, they administer an epi-pen shot. His throat opens up. He's alive. Breathe, Helen, breathe.

Thanks for that one, Lord. Thanks.

Why "Helen. With the Heart?"

2010-11-20T16:24:00.000-06:00

So I actually thought calling the Next World Superpower a great big bunch of organ thieves would cause more hubbub than it actually did. Maybe when China takes over the world, they'll let me live. I'm not betting on it, but who knows? {wink}

Today, I'm going for something less controversial. For example, the latest news on the Kosovo international organ smuggling ring! Ugh. No. Not today.

Something lighter. Why is this blog called "Helen. With the Heart?" I think I wrote a blog post on that early in my tenure, but I'm just a lazy bum so I'm not going to look for it and link it here. I thought I'd tell you the story of Sissy's friend who "like- likes" her. He's a boy, but not her "boyfriend." LOL. From what I've heard, he's a really sweet boy. She had something of a crush on him, and he her, until, finally, they confessed their mutual "like-like" and have been hanging out during recess. Completely innocent although Teacher Man is ready to eat nails over the whole thing. Lets call this boy, say, Mikey.

I was mentioning all this to a friend at the local coffee shop (Hey, Chuck! Actually, Chuck just owns the coffee shop, but I told him I've give him a shout out, back to the story...). So I mentioned this to my friend Becky and this conversation ensured:
     "Oh, is that Mikey with the finger?" Becky says.
     "What finger?"
     "He's got this birth defect. With his finger."
     I laughed and flipped her off, "This finger?"
     "No," she says and laughs, "although I'm sure that would make him popular with the middle school crowd. Sweet boy, but I think some kids are mean to him because he's got this weird finger."
     "Wait, you're telling me a bunch of fifth graders are mean to this kid because he's got a birth defect with his finger?"

She nods, thus proving that kids, no matter where you are in this world, can be real shits. And regardless of how small your disability is, be it a deformed finger or a transplanted heart, people will always remember you as having that thing. Mikey. With the Finger.   Helen. With the Heart. Sometimes, you know, life just cracks me up.

The Controversial Post: China

2010-11-11T08:42:00.001-06:00

I've wanted to post about China and its policies toward organ donation for some time now. I'll start this post by stating my own biases:

1. As a lawyer, I have taken an oath to uphold the Constitution of the United States of America. I do not take this oath lightly.

2. As an American, I believe in and support freedom of religion. And that includes not just the Judeo-Christian line of religions, but the freedom to practice any religion.

3. As a Catholic, I do not believe in the death penalty.

4. As a transplantee, I object to the use of organs from donors that do not want to donate.

Having set the stage on my own prejudices and belief system, I now discuss China and their organ donation system.

In August, 2009, China launched a national organ donor system to reduce (not eradicate) its use of death row inmates as organ donors. Why? Because the Chines government executes prisoners in order to provide organs for both its citizens and its booming organ transplantation tourist industry.

Sixty five percent of China's donated organs are from death row inmates. Michael Wines, China Announces a System for Voluntary Organ Donation, N.Y. Times, Aug. 26, 2009. Amnesty International states that ninety percent (NINETY PERCENT) of transplanted organs come from executed prisoners. The Ugly Business of of Chinese Organ Transplants, France 24 Int'l News, May 23, 2009.

The practice of harvesting organs from executed Chinese convicts has been widely reported in the past, although it was only confirmed in 2005, by Dr. Huang, at a medical conference in Manila. The government has routinely denied other allegations that prisoners’ organs regularly found their way to the black market, often for sale to wealthy foreigners, and that executions were sometimes scheduled to coincide with the need for a specific organ.

Wines, supra.

"It is almost unheard of for Chinese citizens to volunteer to donate their organs after death. Only about 130 people have pledged to donate their organs since 2003...." Wines, supra. Why don't Chinese people donate organs? Apparently, it is against Chinese culture and it's traditional religions. According to Wikipedia, the online encyclopedia, the main religions of China are Buddhism and Shenism-Taoism, although officially, its communist government exposes atheism. See Wikipedia, Organ Transplantation, here. I have searched for information on how Taoists and Buddhists feel about organ donation and have found little that is not spun by American organ donor organizations. See, e.g., Religious Viewpoints, N.Y. Organ Donor Netw'k (absence of Taoism and typos under "Buddhism" relating it to "Baptists"). "Official declarations regarding organ donation have not been made in Confucianism and Taoism. Traditional Confucian views accept the inevitability of death, while Taoism supports more aggressive measures to prolong life. These traditions are also closely intertwined with traditional Chinese medicine, which emphasizes preserving the integrity of the body." Organ Donation: Opportunities for Action (2006).

Who are the majority of Chinese organ donors? Practitioners of Falun Gong. (N.B. If you are not familiar with Falun Gong and its struggle against Chinese persecution, I would suggest you visit this link to become aware of the atrocities committed against them.)

Western academics have described Falun Gong as a "spiritual movement" based on the teachings of its founder,a "cultivation system" in the tradition of Chinese antiquity, and sometimes a new religious movement.... Falun Gong places a heavy emphasis on morality in its central tenets – Truthfulness, Compassion, and Forbearance (Chinese: 真、善、忍). Its teachings are derived from qigong, Buddhist and Taoist concepts.

Wikipedia (footnotes omitted).

As part of an expansion in religious activity into the ideological vacuum left by the collapse of communism, a spiritual movement called the Falun Gong has emerged. Practitioners meet to perform their exercises and to meditate. They are pacifist by inclination and seek to meld modern science with Chinese traditions. It is hard to determine why they have attracted such disfavour, but they are cast as seditious and undesirable. It seems that they are incarcerated in their tens of thousands in order to correct their way of thinking. Apparently when arrested, they are routinely blood tested. There is no reason to believe that it is for the benefit of the Falun Gong—blood group matching, however, is critical to organ donation. The suspicion that Falun Gong practitioners are a source of organs is central to the investigative work of David Matas and David Kilgour who have formulated the allegation

Tom Treasure, The Falun Gong, Organ Transplantation, the Holocaust and Ourselves, J. Roy. Med. Soc'y, Mar. 2007 (footnotes omitted).
Reports that the Chinese government systematically recovering organs from thousands of live Falun Gong practitioners at dozens of "death camps" throughout the country continue to be published.

China executes between 2,000 and 10 000 prisoners each year - the highest number in the world. According to Amnesty International, 90% of transplant operations in China come from executed prisoners. Authorities acknowledge the practice, but insist that prior consent is given either by the donor or their family – something the relatives of several executed convicts adamantly deny. They say the bodies of their loved ones are either not returned to their families or immediately cremated after execution. Because the organ trading market is so lucrative, penal authorities can be bribed into forging consent forms.

The Ugly Business, see supra.

There has been a thriving Chinese black market for transplanted organs for some time now:

Patients also receive some organs, like livers and kidneys, from living relatives and loved ones. But many other organs are bought on the black market by those rich enough to afford them, despite a law that bans organ trafficking.

A black-market kidney can cost up to 200,000 renminbi, or about $29,300, the newspaper stated, plus transplant costs. Because so many people are desperate to receive transplants, corruption is a serious problem, and citizens can wait years before being matched with donors, if a donor is ever found.

Wines, supra. See also, Robert Misik, Lost in Translation: Harvesting Organs from Executed Prisoners, Profile Mag., May 8, 2004 (reproduced at http://faluninfo.net/article/505/).

To summarize: China's government suppresses its minority religions through imprisonment, torture, and execution. It uses these prisoners to support its organ transplantation system and its black market of organ sales. While now attempting to support a voluntary organ donation system, China has a long way to go.

Comment, People, Please Comment!

2010-11-08T08:29:00.000-06:00

I wanted to thank my dedicated reader Allie for commenting on my posts. And no, you certainly didn't offend me on the dental post! Every comment is *cherished* by me. No joke. I appreciate every single one and I wanted to say this: Don't worry about offending me! I'm pretty much non-offendable! Actually, I'm a lawyer. Arguing is just in my blood. And I'm also 100% Italian. Ever hear that saying, "I'm not yelling, I'm Italian, that's how we talk!" ? That's me. If you don't agree with something, say it! I don't mind! I'm actually getting ready to post something really controversial, so sharpen the knives, readers, I want to hear your opinions.

Dylan Thomas, Poet

2010-11-03T07:54:00.001-05:00

Yesterday I spoke of the anger arising from chronic illness. Because I am a poetry geek, I decided to dedicate this post to the famous Welsh poet Dylan Thomas, who wrote "Do Not Go Gently Into That Good Night." Written in 1951 and dedicated to his dying father (the irony does not escape me), it is consided to be Thomas's most famous work. Indeed, this is the way I want to go out of this world.

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

--Dylan Thomas

Emotions of Chronic Illness

2010-11-02T17:52:00.000-05:00

When someone is very, very ill, what feelings do they experience? What are they going through? A lot of people have asked me this, especially now. If you haven't been following this blog, my father is presently engaged in a battle against cancer. I wouldn't classify it as a "battle," per se, unless you'd say a game between the New York Yankees and the local pee wee baseball team is a "battle." Or Muhammad Ali against, um, say, Teacher Man. The cancer is ravaging him, kicking his ass left right and sideways and soon, very, very soon, Dad will lose this battle and go Home.

As I watch my father deal with his illness, and the various emotions that go with it, I can't help but think back to my own experiences with chronic disease. Cancer and heart disease might not seem related, but chronic disease is chronic disease. You face Death. You face what life looks like after your gone. And cardiomyopathy can be a slow and hurtful death. You can't walk. Can't eat. Can't sleep. Work. Socialize. Talk. If you're lucky, like me, a heart transplant whisks away from your first hand introduction to the Grim Reaper. Many of my friends have not been so lucky. But what did I experience? What did my compadres, who now have their new-to-them hearts, go through?

Wikipedia explains theories on grief -- the idea of facing Death -- thusly:

The Kübler-Ross model, commonly known as the five stages of grief, was first introduced by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying. It describes, in 5 discrete stages, a process by which people deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss. The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help frame and identify what we may be feeling. They are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. In addition to this, her book brought mainstream awareness to the sensitivity required for better treatment of individuals who are dealing with a fatal disease.

(footnotes omitted).

I remember the idea of Grief from, oddly enough, the Bar Exam. This was well before I even heard the words "idiopathic viral myocarditis." Together with some other sleep-starved law students, I comprised the following list:

The Five Stages of Bar Exam Grief

Denial: There's plenty of time to study.
Anger: This THOUSAND dollar bar study course is teaching me JACK!
Bargaining: If I study all night, I can drink a beer tomorrow. Maybe two.
Depression: I....will...not....make...it...I..will...die...at...this...desk...
Acceptance: I will pass. We are all going to pass.

Why I never applied this theory to my illness almost a decade later escapes me. Humor was in short supply at the time. I think its important to realize the five stages of grief aren't linear, you don't "go through" denial and then "hit" anger and then proceed in a nice orderly fashion. Every one of us experiences things differently, both psychologically and physically. Denial, for me, was thinking that if I did everything right, I would not need a heart transplant. (Or is that bargaining? I don't know) Juice diets, the hyper-restriction of sodium, vitamins up the yinyang, numerous alternative therapies. That lasted for a long, long time, almost until the day I got my biVAD.

Was there anger? Yes, yes, there was. Why? A strong-bodied person STRUCK DOWN in the prime of her life. Great career: Gone. Chance to have kids: Gone. I worked a HUNDRED hours a week and never had a problem. It. Was. Not. Supposed. To. Happen.

And then there was depression. And acceptance. I've never been able to figure out if I went through a bargaining stage. Maybe it melded with denial. I asked my shrink once why I kept working when it was obvious to everyone I shouldn't be hauling my ass out to deal with litigants. Every. Single. Day. Why was I dragging my laundry down three flights of stairs (and back) instead of sending it out? And, bless his heart, he said that if I quit work, or sent my laundry out, or did a myriad of things I didn't do but looking back, probably should have, it would signify something bigger to me. Perhaps that I was actually sick. And that was part of the denial.

I'd be interested in hearing other people's experiences if you'd like to share them.

The Heart Transplantee's Halloween Costume

2010-10-28T16:27:00.002-05:00

From Amazon.com. Hilarious.

Dental Health

2010-10-22T08:04:00.000-05:00

I'm going to the dentist next week. Actually, The Program has long been after me to go to the dentist and report back, but being the punk that I am, I just ignore them and go my own way. First, because I continue to believe, even subconsciously, that the bug that ruined my heart entered my blood system through a dental cleaning I had the week before I became ill. Second, dental work -- including the X-rays, cleaning, filling of cavities, and on and on and on -- costs MONEY even if you have dental insurance. I used to have money, and now I don't. I have two kids who love sugar. Literally, LOVE sugar. I have to save all my dental money for THEIR teeth. And now my daughter needs braces (what kid doesn't? Sigh...) However, recent reports link lack of oral care to heart disease and diabetes (two things I'd like to avoid in my future, although, being an economics major, I realize there exists more of a socioeconomic link between those things than a direct one). And I have a family history of root canals. Who wants one of THOSE?! {shiver}

Oh, also, our meds encourage "gingival overgrowth." Yuck. Here's the lowdown:

[Cyclosporine causes:] Changes in liver/kidney function, hypertension, bleeding problems, and poor wound healing are among the adverse effects of this potent agent, which also interacts with a number of other drugs. Gingival hyperplasia occurs in some patients; incidence varies and is dependent on each patient and his or her drug regimen. Calcium channel blockers, for example, may exacerbate the problem. Children tend to be more susceptible to gingival overgrowth than adults. ...

Tacrolimus: An immunosuppressive agent used increasingly in place of cyclosporine, tacrolimus causes less gingival overgrowth but is associated with oral ulcerations and numbness or tingling, especially around the mouth.

NIDCR, Dental Health in the Organ Transplant Patient, Jul. 10, 2010.

{shudder} I guess that means don't forget to floss.

Before I moved to Texas, I visited my dentist and get some teeth filled. I had four cavities on one side that I had been letting slide. Dangerous, I know, but what can you do (see above for explanations). Heart transplantees need "specialized" dental care -- that is, you need to pre-medicate and tell your dentist about this. You can't go in like an AOP (all original parts) and get your teeth cleaned, okay? So I had a nice convo with him about germs while he filled my teeth. He said when he started out, dentists weren't required to wear gloves, and when the profession started requiring them, many older dentists resisted the change, saying that gloves would interfere with their tactile abilities. He said he had no problem making the change, since he had already been wondering about his own health (wouldn't you? I mean, you're reaching into people's mouths all day). Once a patient gave him chicken pox, which can be fatal in an adult. It had him bedridden for three weeks. I said, "Plus, what about people who don't know they are infected, say, with HIV or hep? That could be dangerous too." He goes "Absolutely!" Since the chicken pox incident, he wears gloves, changing them for a regular patient three or four times during a session, whenever he touches a counter, the phone etc. I asked if he uses Purell and he said no, just soap and water between patients. Interesting.

A Threefer

2010-10-15T08:06:00.001-05:00

Last weekend, I woke with Buddy leaning over me, begging to watch Thomas the Train. Teacher Man was out of town at his mom's 60th birthday party and we were just taking the weekend to relax and watch TV. I don't know if I mentioned, but Teacher Man and I decided to get rid of cable TV. We have a subscription to Netflix and you can watch loads of movies and TV shows instantly on your TV, plus Teacher Man crawled on the roof and installed an antenna, so we get all the Network Channels for FREE. However, this arrangement has cut down my children's viewing habits (BONUS!). The weekend is the only time they are able to watch cartoons. So, that Saturday, we watched a marathon of Kim Possible episodes (for Sissy) and more Thomas movies than I care to count. Sunday morning I hauled myself out of bed, and said, um, pretty strongly, "LOOK, *I* want to watch the news!" It was classic serendipity that the first story I saw was about Walt McGuire.

Walt McGuire awaits a triple transplant in Methodist Hospital in the Texas Medical Center in Houston, Texas. He has a rare disease called amyloidosis. Amyloidosis is a rare disorder where the body forms abnormally shaped proteins that build up, clog and destroy internal organs. Unfortunately for Mr. McGuire, it has practically killed his heart, liver, and kidney. Oddly enough, Mr. McGuire discovered his diagnosis through a bit of serendipity too -- after years of misdiagnosis (yeah, like that NEVER happens! Ha!), his wife developed cancer (she's now in remission, thank goodness). During her treatment, she asked one of the doctors to look at her husband. It was the right doctor. By that time, however, the disease had irreparably damaged his organs. See Kevin Reece, Man Awaits Risky, First-of-its-Kind Transplant, KHOU-TV, Sept. 30, 2010.

Walt’s diagnosis came too late to save his damaged heart, liver and kidneys, but it came in time for chemotherapy to stem his disease. That gave him a fighting chance.

"I feel sad that someone will have to perish in order for me to survive. I guess that’s the thing that hits me most, you know," Walt McGuire said. "But, you know, I have a young daughter. I have a grandchild getting ready to be born. So I want to make sure I’m here to see all that."

Id.

I think that is most of the recipients' emotions: You don't want anyone to die, but you want to live. Let's keep McGuire in our thoughts and prayers.

Where is my Head?

2010-10-14T11:16:00.000-05:00

I just had the longest, strangest trip I've ever had. And I've traveled. To borrow that old adage, my head just wasn't in the game last night. I took a plane from Austin to visit my parents in Upstate New York, with a transfer in Detroit. While the plane landed in Detroit, I decided to use the restroom. I maneuvered my luggage cart into a stall, locked the door, and then ... I heard a man's voice. "WHAT? Is there a MAN in THE WOMEN'S ROOM? Wait ... AM I IN THE MEN'S ROOM?" A man's voice responded calmly, "Yes."

Okay, so that was the start. Then I got caught in the airport lobby because I didn't know you had to push the GREEN button before pushing the door. This took me an excruciating five minutes of yanking, pulling, pushing, hyperventilating, and cursing under my breath to figure out. "HOW DO I GET OUT OF THIS PLACE?!" I then went to the wrong rental car company. The Avis people were very nice, but they were like, "No, you don't have a reservation." "But I got a confirmation and everything!" "Not from us." Was it Budget Rent-A-Car? Nope. Enterprise? Nope. UGH! Finally, Hertz recognized me. I suppose all this could have been avoided if I had Internet access on my cellphone, but for a variety of reasons, (including the fact that I am, as SuzyQ likes to call me, a Luddite) I do not. So I will continue to have nervous breakdowns in the empty Newburgh airport at 11:45 at night until I figure out a better way. This can't be good for my heart.

This while shebang ended with me going into the rental lot for my rental car, loading my luggage, making a phone call to Teacher Man, telling my folks I was on the road, and then not being able to start the car. Did those *&#^! give me the wrong keys? Darnit! Oh. Wait ... this is not my car. Sigh. Unload the luggage, find the right car (substantially smaller than the original car I was in...) and get on the road.

So now I am safely ensconced in my parents' home, freezing my patooties off (Austin was 82 degrees yesterday. Here: 62. You might think that's not such a great difference. Trust me. It is.) Today's heart transplant tidbit comes from Dave-Not-His-Real-Name, who has been absolutely fantastic in sending me little pieces of news he comes across. Thanks Dave-Not-Your-Real-Name! This one is about a mechanical heart that was implanted into a fifteen year old Italian boy who was ineligible for a heart transplant (I have to say, that has got to suck. But this story has a happy ending. Read on). The link's here:

The Italian boy in question suffers from Duchenne muscular dystrophy which rapidly degenerates the muscles and eventually leads to death. Having such a disease renders the boy ineligible for a heart transplant meaning almost certain death without an alternative solution. Dr Amodeo found such an alternative in the form of a 90 gram fully-robotic heart that took 10 hours to fit inside the boy’s left ventricle. It is a permanent solution offering as much as 25 years of life and is powered by a battery worn as a belt and connected to behind his left ear.

Matthew Humpries, Boy Fitted with a Mechancial Heart, Geek.com, Oct. 4, 2010.

Perhaps mechanical organs are the wave of the future. Hopefully, eventually, no one has to die waiting, they just pull out a mechanical heart, pop it in, and you're on your way. Let's keep our fingers crossed. And now, I need a nap to recuperate from my flight. Have a great day y'all!

Dear Abby Addresses Organ Donation (Again)

2010-10-03T11:23:00.001-05:00

Today's Dear Abby column addresses organ donation again and I wanted to mention it to anyone who gets the Sunday paper. Why's that important? Thousands of people read Dear Abby' column and the Sunday paper gets read more than any other day of the week! When I was little, my dad would go out at the crack of dawn to bring the paper back. We'd read it together around the kitchen table after church. Good memories... But that means tons of unsuspecting people (who are not organ donors yet) are reading about organ donation today. AND THAT'S GOOD.

Grateful Daughter in Owensville, KY wrote to Dear Abby and told the story of her father, who had been on the kidney transplant list for four years. When he received "the call" (and we all know what "the call" is, don't we?), she waited in the hospital waiting room and met the other transplantee family's who were receiving from the same donor. I got choked up just reading it (I know, I know, I'm choked up a lot these days...) Says Grateful Daughter,

I can't help but think of the family who lost this young man, who helped to save the lives of three people while grieving their loss. I would like to extend my deepest gratitude to that family and to all the families who have donated the organs of their loved ones. (cite here)

Dear Abby then goes on to encourage people to have the organ donation "talk" with family members. Thanks Abby.

Tory Storch's Heart

2010-10-01T15:36:00.001-05:00

I looked up the story on Today that was recommended by a reader of this blog and here it is: Click here

Yes, it did make me cry, and maybe it will touch you as well. My donor also was 13 when her life was tragically cut short. I have always wished I was able to learn something more about her, maybe even meet her parents and share what her gift has done for me and my family, but eight years down the road I realize that's a dream I will never have fulfilled. I'm glad for both families in Tory Storch's case. Thanks Storch family.

Transplant News!

2010-09-29T08:29:00.000-05:00

Hey y'all. I've been super busy dealing with family stuff lately, but there is so much news out there regarding organ transplants, I wanted to let you know what's going on!

First, our dedicated and devoted reader Rachel was scheduled to receive an LVAD yesterday. Lets keep her and her family in our thoughts as she continues in her journey toward a new heart.
Comedian George Lopez and his wife filed for divorce. Granted, a celebrity divorce is not HUGE news in Hollywood these days, BUT FIVE YEARS AGO, SHE GAVE HIM A KIDNEY. A kidney. I don't know, but I would think if you gave your husband a kidney, he should repay you by being faithful, taking out the garbage without complaint, and just being an all-around good guy. But that's just me. Apparently, it's amicable.
Connie Culp, the first US face transplant, has started speaking out to encourage others to donate their organs and tissue. The pictures of Ms. Culp post-transplant do not reveal a classically beautiful woman, but beauty comes from the inside, and with that, she is gorgeous. This woman is a credit to all trasnplantees.
Since that high school student died on the football field after running a touchdown, debate continues to swirl as to whether any student athlete should play without a heart exam. The American Heart Association, American Sports Association and the American Academy of Pediatrics all agree: Heart exams could save young lives on the sports fields. I would agree, but I also know that athletics can be prohibitively expensive for many families, especially those without health insurance and with more than one child. I'd be all for it if schools provided the EKG for all their sports teams. But that's expensive for the district as well. Hm. Something to think about.

Hm. There was something else I wanted to talk about but I can't seem to remember it. Yesterday I lost my glasses, my wallet and my keys in my house, so I'm wondering if I'm aging (at the grand old age of 41) or if the prednisone is rotting my brain. Probably both. LOL. Have a great day all!

They're Going to Revoke My HTP Papers

2010-09-18T10:34:00.002-05:00

Or maybe my Italian membership, I'm not sure which. Let's start at the beginning. First, a lot of rain fell on Central Texas these past few weeks.  Hurricane Hermine dropped tons of water on us (which, you know, is pretty relative. Back in New York, it rained every other day. Here, if there is so much of a sprinkle, people don't drive, they keep their kids home from school, board up their windows, dip into their emergency food stash ... they just don't know how to handle WET.) In any event, it's been very damp. This has led to an outbreak of ants. Fire ants, sugar ants, all kinds of ants, ants ants. Do you see where I'm going with this? My home has been infested by ants. But, you know, it's because of the rain. Right?

We first found them in Sissy's bedroom. In her bed, actually. I stripped the bed, washed everything in hot water, dried it in the dryer set to "INCINERATE," redressed her bed, and then ... my eye fell to an overturned cup sitting in the corner of her room. An overturned cup that appeared to be moving. Apparently, the cup had held lemonade at one time, and the ants were, of course, attracted to the sweetness. Aha! Problem solved.  Cleaned that mess and went to bed. No more ants. Or so I thought. The next day the ants were back and they had spread to Buddy's room. Hm. Now I'm in a pickle. What could they possibly be attracted to? Huh.

I moved the children's beds. Imagine me screaming so loudly, they can hear me in Mexico.  Maybe even beyond Mexico, maybe in, say, Antartica. My horror was this: My children have stockpiled treats and leftovers under their beds.  I found a half eaten peach, half-licked candies stuck to the carpet, too many wrappers to count, those damn fish crackers crumbled up and spread everywhere, a desiccated banana (and when I say "desiccated," I mean it looked more like a shrunken head than any piece of fruit I have ever seen) ... Insert the sound of my head EXPLODING. This is not the way an HTP should live. In addition, this is not the way a proud Italian-American should live. My God, if my mother ever saw this, she'd stroke out right here. After, you know, beating me to death with a Dr. Scholl sandal. And if my heart doctor ever saw this ... I was ashamed. No, not ashamed, ASHAMED.

The day after I received my heart, my aunt called Teacher Man and offered to clean the house for my arrival home from the hospital. "I'll bring bleach," she said. I told him to take her up on the offer, because it was probably the cleanest our house would ever get. I've often relied on the data showing if you over-clean your house, you're actually doing more harm than good.  Your family cannot build their immune systems and may be subject to more allergy risks than families who live in moderately clean homes. Yes, there is really such data out there and yes, I believe it.  But in general, my family, including my mother and all my aunts, knows how to CLEAN. After calling my cousin, who tried valiantly to offer me moral support ("You haven't cleaned under the beds in two years? I guess ... that's okay.... you don't really have seasons down there ... so you missed spring cleaning once or twice...or never..."), I dug out a bucket, a giant bottle of Clorox, every rag I ever had, my vacuum cleaner and all the attachments, and went to work.

Okay, there are a lot of precautions an HTP has to take when cleaning. Wear gloves. The cheap ones from the pharmacy are okay, I stockpiled a couple boxes of those when I found them at Costco. Rely on your doctor's advice regarding vacuuming and dusting. For a long time after my transplant, I relied on someone else (mostly Teacher Man) to vacuum and Iwould leave the house.  Then, I'd put my mask on. Now, I use the mask and a vacuum with a HEPA filter. Take precautions, people, you can't enjoy a clean house from a hospital bed.   (Has anyone watched that show "Hoarders?" {shudder} Plain awful...)

I know how to clean. How can anyone raised in an Italian home not know how to clean? I've just chosen to devote myself to other endeavors. But I exhausted myself cleaning. It was bad. Very, very bad. But rewarding. My house shone after I was done. I placed a call to the exterminator and collapsed on the sofa. Ah. A clean house with nice, neat lines in the carpet from the vacuuming (not my usual haphazard style). And then. And then my children returned from school....

WE WON!

2010-09-14T09:04:00.001-05:00

Won what? Well, I'm not really sure. I was checking my email for the blog today, something I haven't done since I took that hiatus and the end of the summer (more on that later) and came across an interesting email that said Helen. With the Heart has won an award for being a blog that exudes brilliance! We won! We won! We won, won, won! Abbiamo vinto! (A tip of the hat to one of my favorite movies, Life is Beautiful") Ahem. Sure, I'm all for exuding brilliance and getting recognized for it, but I can't seem to figure out how to embed the little trophy thing into the blog. I think a visit to Dave Not His Real Name's house is in order (Dave Not His Real Name is our computer friend. Lovely, lovely, generous man...) Anyway, read the letter for yourself!

Dear Helen, Congratulations! Sarah here, and your blog, Helen. With The Heart, was determined to be one of the best blogs to exude overall brilliance. And so, it has received our 2010 Top 15 Donors Blogs award presented by Medical Billing and Coding! You can see your name amongst our winners here at: www.medicalbillingandcoding.org/top_donors/#Helen_With_The_Heart
Winners were chosen through a scoring system that included internet nominations, which came from your reader base!

I also found two beautiful emails from a pre-transplantee and another from an old friend from Columbia Hospital. Those really made my day. And oh yes, my blog has won a million pounds, if only I wire a finder's fee to Nigeria (yes, there were four of those! Given my current financial condition, I hesitated momentarily before deleting them. LOL.)

I'm a Year Older!

2010-09-14T08:33:00.000-05:00

Well, yipee kay yay, yesterday I turned 41. The day started without incident, if you count both of my children screaming at the top of their lungs for an hour first thing in the morning not an incident (and they weren't screaming "Happy Birthday Mom!" like I had planned. What they were screaming about, I do not know.) My friends all sent me Facebook wishes. I ate a piece of chocolate cake and a frozen chile relleno (cake was good, chile relleno, bad). I visited the library and renewed my membership. I saved $12 by borrowing books from the library instead of purchasing them. I picked up my kids from school. They picked up right where they left off on the screaming front. Teacher Man had to work late. My parents completely forgot it was my birthday. My sister called, but Buddy pulled me off the phone. I went to bed.

It was a day. Not a fabulous day, but a day. I just felt blessed I had completed another year, that I'm still alive and that I woke up in the morning. Am I worried about getting older? I suppose. Who isn't? But Rosalind Russell once said, "Taking joy in life is a woman's best cosmetic."

America's Got Talent: Michael Grasso

2010-09-12T08:42:00.000-05:00

No, this isn't a shameless, unrelated plug for one of the contestants on America's Got Talent! Actually, maybe it is, since Teacher Man and Sissy were OBSESSED with this show before we cut cable TV and now they are only MODERATELY obsessed, because you can watch it the day after with Hulu.com. This morning Teacher Man mentioned that one of the finalists, Michael Grasso, has had three kidney transplants. Over on Facebook, The Kidney Group posted this:

Kidney Group is hoping kidney transplant patient, Michael Grasso, a magician who has had 3 transplants throughout his life, will win America's Got Talent.

Kidney Group, Facebook, Sept. 1, 2010. (How do you cite Facebook pages? Hm, a question for all of you who spent time on Law Review)
Check out a bit of Grasso's act before he hit the semifinals here! Good luck Michael, you do all transplantees proud!

Dear Abby

2010-09-07T09:57:00.001-05:00

Recently Teacher Man and I decided to get rid of cable television. We've been needing to cut back on expenses lately; I hear tell the recession "has hit the middle class hard." Why, yes, of course, thank you, New York Times, for bringing that to my attention, I hadn't really thought about it as I sat here staring at my empty checking account.

Teacher Man and I don't live lavishly so there wasn't much to cut before cable went on the chopping block. We figured with Netflix and Hulu and friends who love football (to provide Teacher Man with a safe haven to watch the weekend games), we could save a not insignificant sum. It's been nice without it, quieter, more relaxed. Until, you know, the DTs set in and then you are willing to watch anything, ANYTHING, including grainy, staticky, free crummy local television just so you don't have to hear yourself think anymore. So, with all my new "free time," I've been cruising the 'net quite a bit. LOL.

This poignant letter, from Dear Abby on September 2, 2010:

DEAR ABBY: I am a 16-year-old girl. I recently had open heart surgery and my doctor did a really bad job at the "stitching up." My scar is oversized and crooked. People look at me all the time and ask me about it. I hate wearing certain shirts because of it. Why can't people realize this scar saved my life and stop staring at it? Please, I need some advice. -- SCARRED IN MINNESOTA

DEAR SCARRED: People look at your scar because it is different. They do not mean to stare or make you uncomfortable. A way to take control of the situation would be, when you see someone looking at your chest, to say, "I had open heart surgery. This scar saved my life." If you are asked about it, answer any questions honestly. That will take the mystery out of it -- and word will get around.

I'm in the same position as Scarred in Minnesota, as are most heart transplantees. I get the staring thing all the time. ALL the time. Would I go with a dorky "This scar saved my life!"? No, probably not. I'd probably go with "Didn't your mother ever tell you it's impolite to stare?" or maybe, "Yeah, they're real!" But I tend to [try to] avoid confrontation with snarky humor. For me, it's always been an opportunity to spread the word, hey, I got a new heart, give yours when you no longer need it! (I admit I despise when people then feel I've given them permission to question me like a prosecuting attorney. "Can we talk about your sex life instead? Because I'd feel more comfortable talking about that.")

Of course, I have to say this girl is only 16 and her clothes are probably more revealing than most other people with these kinds of scars. She hasn't really developed her personality yet, and now here's this scar, right in the middle of it. And in my first year or two, I was more self concious than I am now. I think I want to tell Scarred in Minnesota, it's not all that bad, you'll get used to it, you'll grow into your body and your scar and you'll eventually come to appreciate what happened. And, yes Virginia, there are always plastic surgeons

Harmon Killebrew

2010-09-03T08:21:00.001-05:00

Ah, September, soon the siren song of the World Series will be heard, drawing thousands upon thousands of fans to their televisions and sports bars. I have never much appreciated sports of any kind, preferring instead more solitary pursuits, like reading and writing. However, my dear and wonderful friend Brooklyn Jewel (hence, her nome de plume!) and her daughter Nadia (a gymnast) came to visit Austin TX and we engaged in conversation about our two passions, for Brookyln Jewel and Teacher Man it's sports, for me, transplants.

Harmon Killebrew is a Hall of Fame baseball player, second only to Babe Ruth in his American League career home run record. He played for the Washington Senators and the Minnesota Twins (ultimately the same team, as the Senators moved to Minnesota and were renamed), leading the Twins to the World Series. All in all, Mr. Killebrew has an impressive career in baseball.

The crossover point here being that Brooklyn Jewel mentioned Harmon Killebrew's granddaughter may need a heart transplant. A little research revealed, yes, that's true, little Caitlyn White, has been struck by dilated cardiomyopathy and may need a heart transplant. According to the Harmon Killbrew Foundation, "Caitlyn May White of Gilbert, Arizona celebrated her 9th birthday this year in the ICU at St. Joseph's Children's Cardiac Hospital. Caitlyn was diagnosed with Dilated Cardiomyopathy with WPW Syndrome 2 weeks before her birthday. Until then Caitlyn appeared like any other normal, giggly, loving little girl enjoying her family, school and Girl Scouts. Caitlyn has to wear an AED life vest all day every day in case her little heart stops. If the medications don't work she will need a heart transplant. " See http://harmonkillebrewfoundation.org/caringforcaity.cfm. The Killebrew Foundation recently held a golfing fundraiser for Caity's care.

Sometimes I think of how emotionally painful it was to struggle with my disease -- I can barely even type that...my DISEASE (insert shudder here) -- in my mid 20s and early 30s. I do not know how a 9-year-old can have to wherewithal to face the possibility of a heart transplant.

Harmon Kilebrew gave Americans a lot of good, wholesome entertainment for many years. Let's keep this family in our thoughts and prayers, people. Thanks Brooklyn Jewel, for bringing this story to my attention! Miss you, hon!

Texas: Dead Last

2010-08-30T08:23:00.002-05:00

Everyone who lives in Texas is proud to live here. I've only lived here three years and I'm proud to be part of the Lone Star State. It's not perfect, but what is? We have the best food, the best land, the best beef, all in all, we're the best. HOWEVER, I just found out that Texas, dear sweet Texas, is dead last in the number of registered organ donors.

{cue the crickets....}

I'm just giving you some space to digest that comment. Texas is last, at the bottom, we're not playing for second place, we're playing for FORTY-NINTH PLACE. Texas ranks after all those states no one really thinks about. Like North Dakota. And Mississippi. How can Texas lose to MISSISSIPPI? AND ARKANSAS?

According to the Houston Chronicle,

... Texas has the nation's lowest percentage of registered organ and tissue donors, several recent initiatives have more than doubled the state's donor rolls this year.

The number enrolled in the Glenda Dawson Donate Life Texas Registry has ballooned since Jan. 1, when state law required Department of Public Safety clerks to ask all driver's license and ID card applicants whether they would like to register as organ donors. Since then, nearly 70,000 donors a month have joined the pool.

Cindy George, Organ Donors Turning Out in Force in Texas, Houston Chron., July 27, 2010.

Part of the reason for Texas's low status is (1) the registry just started three years ago; (2) organ donation was a low priority for a state with no state income tax to fund registries; (3) really, do you need a registry to get organ donors?

Addressing number 3, do you need a registry? Will hospitals adhere to someone's wishes to donate their organs if their family does not agree? Of course not. Every other state has had a registry for people to donate their organs, but hospitals want the next of kin's consent. Practically, you can register, but you won't be an organ donor unless you die a brain death and your family agrees. It's not over until the fat lady sings.

That being said, I wanted to talk a little about the comments following the Internet publication of the above article, which can be found here. Several people referenced "Obamacare." Huh? What? Others ranted and raved about how "everyone makes money off of organ donation except the donors and their families." How did politics got mixed up with organ donation? I used to go out and talk three, four times a week in corporations, law firms, schools, hospitals and many, many people use to ask, "why WOULDN'T you donate?" Because it seems almost unbelievable -- to most reasonable, caring people -- that you would be gone and have no more use for your body, and someone else needs it, and yet you would reach out from beyond the grave and deny that person the ability to live.

Some people just have an axe to grind. As for the comments referencing money, and payment, and how people want to profit off the death of their loved ones, you cannot know the pain I went through, my husband went through, my parents went through, and my friends and family went through without experiencing the process -- or having your spouse, child, sibling go through it -- of waiting for an organ that may or may not come in time. In addition, I have had friends die waiting. Not just one or two but many, many friends. Each with their own family, each with people who miss them.
Perhaps I've been a little sensitive about unkindness in the world lately. I know there is a recession on and people are hurting. But if you have access to a computer, you are not in a position to even think about selling your own organs. And it goes without saying that it is just ethically WRONG to sell the organs of a deceased family member. Why has consumerism infected organ donation? I'm going to open my mouth and my mother's voice is going to come out now: Is this what the world is coming to? Ugh.

I'm Back

2010-08-27T09:46:00.000-05:00

Hello, my dear friends. I'm back to blogging. The summer turned out to very long, as a lot of stay-at-home moms can attest. After my kids' summer activities finished, and I ran out of money to send them to more camps, I was consumed with caring for them and their needs. But now they are back in school and I can hear myself think again, I have a little time to share my thoughts with you all.

We're going to start off slowly today. Dave-Not-His-Real-Name was kind enough to send me two articles while I was on hiatus. The first one talks about mice and the investigation into using their "specially engineered T-cells" to make "organ rejection a thing of the past." I'm on board for that. The second is about "look alike [feeding] tubes" used in hospitals. These tubes have caused deaths in the past. Interesting read, especially if you have been on a feeding tube (which I have). Until tomorrow, I remain, Helen. With the Heart.

Ink

2010-07-28T18:52:00.001-05:00

Sorry its been so long since I last posted. It's summer you know, and my kids' summer activities ended two weeks ago, Teacher Man went back to work, and blah, blah, blah, I know, everyone has their own problems, but I've just had a lot of work around here. And just as I finished typing those three sentences, Buddy started melting down because the water I drew for his bath was too hot (quite frankly, it was lukewarm. Luke. Warm. Just too lukewarm for him.) Sigh. Dude, just let it cool off. There is no need to scream at the top of your lungs. Repeatedly. For no damn reason. And that's my summer.

However, on Saturday night, my friends and I made a little break for ourselves. We attended the Texas Roller Derby for a match between the Holy Rollers and the Rhinestone Cowgirls. Great, GREAT time.

Sometime during the second quarter, when we weren't screaming our lungs out in excitement and encouragement, SuzieQ suggested we pick our own roller derby names. Super fun! For those of you who have never been to the Derby (or seen Whip It), the names are wonderful, rollicking, and often, extreme. For example, we sat behind the B. Hind family. Yes, Rozy B. Hind's family was there. And then there was Smarty Pants, Dusty Doublewide, Suzy Spankit. Suggestions for me were Heart Attack, No Heart Helen and ultimately, Heart Less. Which I like.

I saw a lot of tattoos at the Derby. The ink was plentiful and gorgeous. One in particular stood out to me:  A woman at the door had an anatomical heart tattooed on her shoulder, in beautiful red and blue. Absolutely gorgeous. Wish I could...be so brave...

I've wanted a tat for a long time, over a decade I believe, even before I had my heart transplant, but I never had the courage to pull the plug. When I was in high school (late 80s), it was a super big deal to get a tattoo. You definitely made a statement if you got a tattoo. Becky N., who sat in front of me in Megdanis's math class and was a quintessential bad girl, had a huge parrot on her shoulder.  She liked to show it off in racer back tank tops. I used to stare at it enviously, but I was (sigh) a good girl. And really, really afraid of my father. Taylor Swift's father told her if she ever came home with a tattoo, he'd remove it with a belt sander. Yes, well, Mr. Swift took lessons from my dad. Then I became a lawyer. Lawyers don't have tats.

So now, my friends and I are discussing tattoos. We are 40 and today, tattoos are appealing to a wider market.   I want one of a green ribbon -- the symbol of the Donate Life movement -- surrounded by several significant dates in my life, including the date of my transplant. On my foot. But the question is: Can a transplantee get a tattoo?

Short answer: Nope.   Blood-borne diseases, especially hepatitis, present a real risk to the immunocompromised. However, as lawyer, I feel compelled to discuss both sides of this issue. Evidence now shows that the risk of these infections may be exaggerated. In fact, we all could be at more risk for catching an infection at the dentist's office.

The CDC summary data about tattooing and HIV is as brief as it is dramatic. In its HIV/AIDS Surveillance Reports, CDC has consistently noted that it has documented "no cases of HIV transmission through tattooing" anywhere in the country since it began tracking such data in 1985. By comparison, there have been at least 7 cases of HIV transmission associated with dentists and dental workers. ...

About hepatitis: Of the 13,387 annual cases of hepatitis detailed in the most recent CDC report, 12 are associated with tattoo studios. By comparison, 43 cases -- or better than 300% more -- are associated with dental offices. Both numbers would appear to represent low levels of hepatitis risk -- a risk that has been further reduced by new safety procedures required by state law of both dental offices and tattoo studios.

http://www.tattooartist.com/health.html (footnotes omitted)

Longer answer is much, much longer. Opinions vary. Some doctors say yes, others say no way. Even a reputable tattoo artist in Colorado says,

There is so much to tattooing, it isn’t funny. There are many different skin types. There are many different needle types to learn. Some medications make tattooing a bit more difficult. With some medications and illnesses, it isn’t a good idea at all to get a tattoo (like certain heart conditions; out of control diabetes; folks who are immunocompromised, etc.)

http://www.enchanted-ink.com/faq.html (emphasis added)

Yes, you can get one if you have the artist who operates in a sterile environment and uses new needles and new hoses. But you are taking a huge risk by getting yourself kicked off the transplant list for six months (in the event your newer organ fails and you need another replacement) AND, while your parents might no longer have the authority to kick your scrawny ass over permanently marking your body, your heart doctor has now taken their place and I'm sure, would be more than happy to tear you a new one over this activity. But here's my conclusion: Tattoos have always represented you are willing to take a risk. This is a risk for transplantees. If you feel so compelled, take all necessary precautions (including discussing it with your doctor) and then get one.

Hey, it's July.

2010-07-19T14:07:00.000-05:00

It's somewhat difficult to post when my children are home from school. I'm trying to beat my record for last year, but I don't know if I can get four more posts in this month. Maybe. I just thought I would encourage all of you out there who are still capable of giving blood to go during the summer, when the blood banks have shortages due to vacations and well. lack of child care. Here is a picture to go with this sentiment today. Get it? Myra Mains? Yeah, it took me about three months to figure it out too. Damn prednisone. LOL.

Chuck E Cheese: HTP Hell

2010-07-18T11:15:00.001-05:00

I want to thank My 2d Heartbeat for the idea of addressing the relationship with Chuck E. Cheese and the immunocompromised.  He commented that he had a family birthday party to attend there and considered wearing a mask. I have two children who love, love, love The Cheese and I have often wondered if I should drench myself in Purell before I even step foot in the place. The wilting salad buffet, the children HACKING right onto the games, the faint yet inescapable whiff of dirty diapers ... all that makes a person without an immune system cringe in anticipation of a four-week-long convalescence from a simple cold.

But who is more obsessed with germs that your average transplantee? Yes, that's right, the A+ Mom. What is an A+ mom? Often I say to my husband, "Look, I'm not shooting for the A+ in Parenting, I'm just want to pass.  A high C, maybe..." The A+ Mom really does everything right, giving her kids sugarless gum to chew after lunch at school to prevent cavities, singing the "Happy Birthday" song as they wash their hands, making fabulous craft projects for her adoring minions, on school nights, and therefore, as a reward, is held up to be the Martha Stewart of the playground sect, setting unreachable standards the rest of us will cry over when we fail to attain them. The A+ Mom is very concerned with germs. VERY concerned.

So I trolled the mom blogs for something on Chuck E. Cheese. Over at MomLogic, I found it. The author swiped test strips on the Cheese's tables and games, under the supervision of a renowned germ expert.  Ultimately, lots and lots of germs existed on tables, chairs, the little yellow school bus, the ball pit, and on and on and on. Read the article.  Granted, Chuck E. Cheese's management says they spray everything down with antibacterial germ killer and try to maintain levels of cleanliness throughout the day, but with the large volume of kids, it's hard to keep the place pristine.  Also, if we look at the employees, they hire kids. High schoolers. Which is fine, in my opinion, because I worked in high school and I know it can be a necessary evil, but really, does a 16 year old kid trying to save money for his first car care about sanitizing his boss's place? Not likely. A few swipes with a dirty rag and they're ready to punch out.

My thoughts are these: First, I am not saying stay out of the Chuck E. Cheese. My kids love it and on the rainy summer days, it can be the only thread holding me together with my sanity. However, take your own precautions. MomLogic has some good suggestions. Here are mine: Bring bleach wipes. They make them in the little carry packs now. Wipe the seat and the table. Park yourself there. Bring your own food. Buy a little spritzer bottle at the drug store. Fill it with alcohol (not booze, ALCOHOL, for disinfecting, though let me tell you, a shot of tequila at The Cheese would make ME feel a hell of a lot better). Every time you get up to help your kids, before you sit back down, spritz your hands with the alcohol. Do not touch your eyes. Germs get into your body through your mucous membranes. And with all the alcohol on your hands, it would just plain hurt.

Okay, that's all. Stay safe out there, people.

It's Summer and that Means: Water Parks

2010-07-05T17:11:00.002-05:00

Teacher Man and I needed to purchase tickets for four to Disney World for two days. Even without all the add-ons (and there were PLENTY), the total came to around $600. Insert giant eye-popping YOWSA! My kids' college fund just got turned into a Disney fund. But that's not the point of this post -- ooh, before I forget (and the prednisone has that effect some times) I wanted to give my very valued reader, Lennie, a shout-out! Lennie! Hey ya, L-girl, keep reading and posting your comments, I love every single one! -- back to the point of the post, one of the add-on was the Disney Water Parks. we passed, because of time constrains and money constraint and because they are big GIANT BALLS OF DEATH FOR ME!!!!!! LOL.

During spring break this year, SuzieQ and I took our kids to Great Wolf Lodge over near Dallas. It's a lovely, lovely place, with a gorgeous indoor water park. My kids LOVED it. I had planned the trip early (like, six months early) and was able to snag a very good price on a room decorated to look like a summer camp. It was March, still too chilly to go outside, but the indoor park was wonderful. Until I started thinking, "you know, should I have researched as to whether this is dangerous for me, an HTP, before I came?" When I came home, I looked it up and indeed, it is dangerous for the immunosuppressed to visit water parks. Bummer. Not like I'm saying, don't go, but make yourself aware of the precautions and the symptoms and make your own educated decision.

An HTP can catch something called cryptosporidiosis at a water park. I wish there was a cool abbreviation for this illness. I even called Tink to ask her (she's a nurse) but she only thought I was crazy and didn't have anything to say but, "Helen, you're crazy," so we're just going to call it "crypto." What's crypto you might ask?

What is cryptosporidiosis?

Cryptosporidium is a parasite that can cause diarrhoea (cryptosporidiosis). Cryptosporidium infections have been reported in humans and a variety of animals such as cattle and sheep.

What are the symptoms of cryptosporidiosis?

Symptoms usually include diarrhoea, stomach cramps and often fever, nausea and vomiting. The first symptoms may appear 2 to 12 days after a person becomes infected. People with normal immune systems usually have symptoms for one to two weeks and then recover fully.

How does cryptosporidiosis affect you if your immune system is severely weakened?

In people with weakened immune systems, such as HIV infected persons, cancer patients, and organ transplant recipients, cryptosporidiosis can be serious, long-lasting and sometimes fatal. If your CD4+ cell count is low, cryptosporidiosis is more likely to cause diarrhoea and other symptoms for a long time.

http://www.health.nsw.gov.au/factsheets/environmental/cryptohiv.html

Wait...did that just say...fatal? FATAL!!!??? Sweet Mother of God, I could catch something fatal at the local Wet 'n' Wild? INSERT THE SOUND OF ME SCREAMING AND RUNNING AROUND MY LIVING ROOM IN CIRCLES UNTIL I FAINT.

Okay, my panic attack aside, the water park was super clean, but once I started thinking of the little kids running around the water slides with their poopy diapers and the potential skin rashes peeling off people, and my wee tiny lil' immune system, I got a little freaked out. I'm going to send Teacher Man with my kids next time.

Friend of Ron H?

2010-07-01T16:17:00.000-05:00

So during my vacay I was purchasing some groceries and the cashier -- a pretty youngish guy -- wore a "Donate Life" bracelet. I was so happy. I just wanted to connect with someone, you know? I tried to think of a tactful way to mention the bracelet until finally I blurted out, "so, how do you know Donate Life?"

That launched both of us onto a very awkward conversation that went something like this:

"Huh? What?"
"Your bracelet...Donate Life?..."
"Oh, yeah..."
"I have one at home."
"Huh? What?..."
"A Donate Life bracelet."
"..."
"I left mine at home..."
"Oh, yeah...."
"So," I say, my hand kind of waving in the direction of my scar (I was wearing a V-neck blouse, it was obvious. Or so I thought) "....you too?"
"Huh? What? Oh, no, I smoke too much..."
And this is where I started thinking, he's got to be connected to a donor, but we are two trains on parallel tracks, neither one of us wants to clarify what we are saying, we are just not connecting, shut up Helen, SHUT UP!

And then as I took my grocery bags, he said, "Keep saving lives! Out there..."

And I thought, okay, I don't know if that guy is slow, or if I'm too subtle, or if he's smoking something other than tobacco, but wouldn't it be great if the transplant community had something like Alcoholics Anonymous, with their "friend of Bill W."? If you are a "friend of Bill W.", other alcoholics in the AA program know you, also, are on the wagon, without you ever having to announce "I'M IN THE PROGRAM!" You can even page Bill W. in an airport so that a fellow supporter will come and help you get through the temptation of airport bars. Or, you know, so I've heard. LOL.

I would love to have a code for being part of the transplant community. Like, "a friend of Helen. With the Heart." LOL, oh, I jest. Maybe we could connect it to Ronald and Richard Herrick, the identical twins who were the first kidney transplant. Ronald was the donor and Richard was the recipient. And that way I could have said to this guy, "Are you a friend of Ron H.?" And he'd say, "Yeah, my brother introduced us." And that way I would know his brother was a donor and I would smile and nod, and say, "I know Rick H. He said to tell your brother thanks." And we could have walked away satisfied and connected without anyone around us knowing our business.

My gosh, what a fabulous idea. Sometimes I am too brilliant for my own good. LOL.

Back from Vacation

2010-06-28T08:59:00.002-05:00

Hey y'all! I'm back from vacation. Tanned, relaxed, and ready to write! We visited my folks for about a week. Teacher Man's family made the trek over to my folks house to visit with us and we enjoyed seeing them. You might think the whole trip was one Hallmark moment after another, but, as I was telling SuzieQ, that's just not "us." I was comforted by the fact that my dad did yell at me so loud my hair flew back (several times). Good old Dad. Have you ever watched that show, Cake Boss? That's about as close as I can get to describing how my family interacts. There was one episode where this big guy topples over in the kitchen from a heart attack. Even before he hits the floor, someone yells out, "I TOLD YOU TO GO TO THE HOSPITAL BUT YOU DIDN'T LISTEN!" Wow, did that bring back memories. I felt like I was ten years old again, sitting around the Easter table, sipping 7-Up and nibbling on a sfogliatelle. (NB: That link is for Teacher Man, who, when I asked how to spell "sfogliatelle," answered, "What's a sfogliatelle?" to which I replied, "A sfogliatelle, a SFOGLIATELLE! It's like this ... pastry thing...ugh, let me just get you a picture..." Thus proving that, eventually, we all turn into our parents.)

After leaving my parents we headed to Disney World for a real vacation. Sissy and Buddy were beside themselves with excitement. I was actually quite surprised at my energy levels while at the Magic Kingdom and its satellite parks, which is to say, I had a ton of energy and was really quite cheery te entire time. However, it was absolutely scorching. I mean, the part in my hair got sunburned. Yeouch. It was really too hot for anyone, ANYONE, original heart or no, to be standing out in the heat for six hours or more on end but really, it was a fabulous time. There will be more posts on this vacation to come but this point is very salient to anyone who has a new heart: Do not plan to eat the park. It's all junk food or a buffet. We packed sandwiches and drinks and then sprang for ice cream and the occasional piece of fruit for the kids. It was much better for everyone involved.

More later folks, I have laundry to put away (of course)...

South Africa is More Than the World Cup!

2010-06-17T15:42:00.002-05:00

I had planned to write about how yesterday was World Blood Donor Day, but I realized I would be repeating myself, as I wrote about that last year around this time. So I found an EVEN BETTER story to write about today.

Have you been watching the 2010 FIFA World Cup out of South Africa? If you haven't, you are the only person on God's Green Earth not watching it. FIFA estimate 2.2 billion people will watch at least part of the World Cup. Yesterday, Switzerland, the long shot at 250-1, whipped Spain's butt in a huge no-one-saw-this-coming bout (Spain was a favorite to win --not just that game -- but the whole shindig). Today, Mexico kicked France's patootie 2-0. Wow. Yes, I will agree that the vuvuzelas are driving me crazy too, but the World Cup only comes around once every four years. In fact, when I was in the hospital eight years ago waiting for my heart, you could NOT bother the nurses' when the Phillipines played. Shoot, if you planned on stroke out, plan to do it on a commercial break. LOL.

But, today, I discovered that South Africa has become the first country to complete a kidney transplant between patients with HIV! Why is this significant in America you might ask?

HIV patients can survive decades with the help of medications. Now, many of them also struggle with kidney disease, which in some cases is a complication of their infection, and need dialysis.

But HIV patients suffer anemia more than other dialysis patients and face additional risks. The waiting list for a donor kidney is currently eight years in the United States. Allowing HIV-infected patients to donate organs might allow some patients with HIV to receive organs much faster, Stock noted.

U.S. doctors already transplant organs between donors and patients with hepatitis C, he added.

South Africa 1st to Transplant Kidneys Between PatientsWith HIV,

Eight years waiting. Wow. Once, I discussed the reality of HIV patients doanting organs to other HIV patients with some high school students. Unfortunately, the minute I mentioned HIV, they immediately became paranoid that they could catch HIV from a transplant. No, no, no. The doctors TEST for HIV. Please. Take a breath. No one is getting HIV from a transplant. But if you already have HIV and you are waiting EIGHT YEARS on dialysis, why not? HIV patients can survive decades with the help of medications. Now, many of them also struggle with kidney disease, which in some cases is a complication of their infection, and need dialysis. Well, here might be the stickler:

The early successes in Cape Town may be difficult to translate to America. Drug-resistant strains of HIV are more common in the United States: Doctors fear that an organ recipient with HIV will become infected with a strain more drug resistant — and dangerous — than the one they already have.

Yes, when America sets its mind to do something, well, darnit, we're going to do it BIGGER and BETTER and MORE DRUG RESISTANT than the next guy.

Greetings from Upstate NY

2010-06-16T10:38:00.002-05:00

Hi everyone. First, I wanted out give a shout-out to Linda, my HS friend, for her well thought-out and presented comment to my Costco post. And thanks for becoming an organ donor. I'm very appreciative of your thoughtfulness and generosity.

Right now, Teacher Man and I have hauled the kids out to NY to see my parents. If you haven't been following, my father received a terminal cancer diagnosis about a month ago. We'll be here about ten days. My father has absolutely forbidden me from revealing anything about his health, status, or state of mind, so right now, I got nothing. I'm still in good spirits, although I can't say that about anyone else involved in this whole debacle. Sissy was thrilled that we came on an airplane, rather than driving three days to get here. I told Teacher Man after last year's trip, that I would never drive again. And for as long as I can keep that promise to myself, I will. Last year we were all in the SUV, with our dog, and within an hour (the first hour!) Teacher Man was ready to drive into a tree. LOL. And then I said, "And only 26 more hours to go!" Yeah, that went over like a lead balloon. LOL.

So here's an amusing story from my family archives, that has absolutely nothing to do with my dad's cancer, or really, heart transplants, I just felt like lightening the mood a little:

My mother had a spring tradition when I was growing up. On the first day of spring, she would remove all the blankets from every bed in the house, put them in a big box, add mothballs, and store them in the attic. It's spring! Time for the blankets to go! Pack up your sweaters! You won't need them! It's spring, it's spring! Mind you, I grew up in NY. Sometimes spring comes on, say, March 20. It's still cold in New York. Sometimes there is even snow on the ground. And there we are, sleeping under a sheet, shivering all night. One year, when I was about 8 or 9, I heard my father jump up out of bed, stomp toward the attic door, throw the door open and then climb up the stairs and start throwing blankets down, like Santa Claus, yelling, "Come on, kids, getcha blankets here! Getcha blankets here!" And my sister and I scurry like mice out of our rooms, grabbing as many blankets as our little arms could carry as, all the while, my mother lay in her bed, huddled under a sheet, chattering in protest, "But it's spring! It's spring!"

An HTP at Costco

2010-06-09T17:02:00.003-05:00

Perhaps it wasn't Costco. Now that I think about it, it was probably Sam's Club or BJs. But quite frankly, the warehouse stores all kinda meld together. Today I pondered the wide variety of disabilities you can't see. This would include not only having or needing a heart transplant but neurological disabilities, traumatic head injuries, the PTSD from the wars' combat survivors and on and on and on.

What to do? I think first and foremost is to realize that people can have a disability you can't see. A lot of people consider the disabled limited to people with spinal injuries. If you can't walk, you're disabled. Sure, but what about my best friend who suffers from lupus? What about my friend Scissors Girl, who walks around with a VAD under her blouse? What about the autistic kid everyone thinks is just a mismanaged brat? If you're lucky enough to have no debilitating illnesses, conditions or injuries, first, be grateful. Second, be sensitive. Take a second to watch your tongue before you speak. For example, my friend, recuperating from a traumatic head injury, used the combined handicapped/family restroom in the mall. He emerged to an irate woman who not only did not have a child to take in the family room (and therefore had no reason to confront him, right? Such as, hey buddy, my kid wet his pants because you were hogging the disabled bathroom that doubles as the unisex/family restroom, dammit!) but really just felt like she had a lot of unresolved anger that needed venting. Here was a convenient target for her, yes, it seems obvious that she should confront this seemingly able-bodied man coming out of the restroom angrily and loudly. Sigh. When he explained, "But I'm disabled," did she apologize? Did she blush and excuse herself? No, instead she screamed out, "You don't look disabled to me."

Onto the story of me in Costco. So I was shopping and there was this employee fixing samples. If you have a transplant you know you can't take samples. You haven't seen them made, you don't know who sneezed on them, you don't know how long they've been marinating on the little cart there, you just have to suck it up and hold your breath and don't take even ONE sample because we all know, today it's a sample of innocent-looking potato chips today, tomorrow you're inhaling a cart full of rancid beef covered in on-sale sauce and regretting it. So this gentlemen made a nice chicken.sample in sauce. And I swerve my cart as he offers me a sample.

I refuse politely. I think perhaps this older gentleman had a hearing problem because he yelled, "WHY DON'T YOU WANT ANY CHICKEN? CHICKEN IS GOOD FOR YOU! TRY SOME CHICKEN!" Then everyone around him looks at me like I'm the lone teetotaler at the frat's keg party and says, "ooh, it's delicious, try some chicken! it's sooo good, this chicken!" "No, no thank you..." "Come on, take the chicken, it's great!" Finally I blurted out, "I had a heart transplant and I don't know how you PREPARED that chicken, I don't know how you STORED that chicken, I don't know who TOUCHED that chicken, I'm really sorry but I can't take your chicken!" I was practically in tears. And this attracted a crowd of chicken-loving patrons saying, "you had a transplant? wow! really? you're so young! do you know your donor? of course you shouldn't eat this chicken! you don't know where this chicken been! I'll eat your share, okay, honey..."

Thankfully, at the time, I carried around organ donor forms so everyone at the chicken filled one out to make up for pressuring me to eat their chicken and I went on my chicken-free way.

I'm Pregnant!

2010-06-03T14:24:00.004-05:00

Nah, not really. I just wanted to say that once in my life. And for all you women out there who can't or won't or don't want to have kids, here's a shout-out from Garfunkel & Oates at this link.

Gary Coleman: Transplantee

2010-06-03T11:15:00.001-05:00

On May 28, 2010, Gary Coleman, former child star of the 1980's show Diff'rent Strokes, passed away from a brain hemorrhage. He fell down a flight of stairs. Pertinent to this blog, Mr. Coleman was a transplantee brother. He had received two kidney transplants over the course of his life -- one in 1973 and one in 1984. When he passed away, he was on daily dialysis. In fact, he had just returned from a "grueling" four-hour dialysis session when he fell.

Gary Coleman had long been plagued with familial bad luck. In 1989, he successfully sued his parents for the misappropriation of more than $3 million from the trust fund set up for his Diff'rent Strokes earnings. There were legal and financial difficulties, including a recent arrest in Utah. He spent much of his later life trying to earn a living, with stints as a security guard and appearances on such low-rent shows as Divorce Court. This morning, the news reported a big uproar as to whether his wife, Shannon Price, had the authority to take him off life support after his fall. Purportedly, a "secret" divorce occurred. He was estranged from his parents. Who had the authority to take him off life support?

Shannon Price. Why? He had made an advanced directive regarding his care.

In a statement released Wednesday by Utah Valley Regional Medical Center where Coleman died revealed that the star "had completed an Advance Health Care Directive that granted Shannon Price permission to make medical decisions on his behalf."

The document remains in effect whether or not a couple are married. Price gave the Utah medical center permission to release confirmation of the directive.

Ken Lee, Lawyer: Gary Coleman Was Divorced When He Died, People.com, June 2, 2010.

Important moral of this story: Advanced directives are important. If you live alone, if you are not married to your partner, and especially if you are estranged from your next of kin, you must, must must do an advanced directive and appoint a health care proxy. You can get forms off the internet or from your hospital. Save everyone some trouble. Thanks for the laughs, Gary, rest in peace.

Now You're Talking My Language!

2010-05-27T18:35:00.001-05:00

Lawsuits, assumption of risk, oh baby, I'm in heaven!!

So here's the deal. It's a seven year wait for a -- for lack of a better term -- cadaver kidney in NYS. Vincent Liew had been on the list for 5 years and received an organ from a woman who had passed from a stroke and also -- ALSO -- had, unknown to anyone, uterine cancer. When the hospital discovered the donor had cancer, they advised Mr. Liew to divest himself of the kidney. He refused. Maybe he thought, "Hey, this has been five years in the making, I'm off dialysis, I'm a man, I'm not catching uterine cancer." Lo and behold, when you gamble, you have to be prepared to lose.

[The hospital] should be held responsible "for taking a huge risk with Vincent Liew's life" by not urging him to have the kidney removed at once, [the Liew estate's lawyers] said during closing arguments in the medical-malpractice case, which is refreshing longstanding questions about organ transplant risks and rewards.

NYU Langone Medical Center says it advised Liew of the risk, honored his choice and aggressively monitored the kidney for signs of cancer. Though tests found nothing, Liew suffered back pain and ultimately had the kidney removed about six months after the 2002 transplant. He died about three weeks later of cancer that came from his donor, his autopsy said, without specifying the type of cancer. He was 37.

"This should not have happened, but it's not NYU Medical Center's fault. It's not (transplant surgeon Dr. Thomas) Diflo's fault. It's not Mr. Liew's fault," the hospital's lawyer, Robert Elliott, said in his summation. "The best care that could have been provided was."

Liew's widow, Kimberly, is seeking more than $3 million in damages in her lawsuit against the hospital.

Jennifer Peltz, NY Man's Kidney Transplant Gives Him Woman's Cancer, AP, May 27, 2010 (http://news.yahoo.com/s/ap/20100527/ap_on_he_me/us_transplanted_cancer)

What do you think? I feel bad for this guy and his family, I really do, but he had the opportunity to have the kidney taken out and he refused. I believe that each one of us is responsible for our on well being. It is not up to our doctor to force us into anything. Other opinions are, of course, welcome. Maybe the answer is for more people to donate and then they can pick and choose and be able to give people like Mr. Liew a second kidney for the asking.

I Can't Catch a Break Here

2010-05-24T19:50:00.002-05:00

My daughter was out from school last week, three days. Now I have caught what she had. Darnit! I tried really, really hard to wash my hands, to not put myself in her breath, showering in the Purell. But I have it now. A crazy stomach flu that doesn't make you vomit, but makes you hurt. And hurt bad... Saturday night I thought my insides had busted open inside of me. I thought I had a crazy ulcer that was just gushing blood through my abdominal cavity. I really can NOT catch a break here.

So, ever conscious of protecting Teacher Man's sleep, I managed to crawl to the living room and lay in a fetal position by the television, watching late-night infomercials, trying to sip some milk (because that's the only thing I remember about ulcers, milk helps. Doesn't it?), and thinking, "Okay, this is it. Tonight's my last night. What do I have to do? Nothing. Okay, great, I'm ready. Wait, I wanted to call that one ex-friend and tell her to go f**k herself. Oh well, I'm not going to get to that. Too bad. Maybe I should vacuum under the sofa, I could grow mushrooms in that dust. Never mind. My mom will need something to do when she comes. Will Teacher Man be able to tip the television over on me so this looks like an accident and he can collect the one life insurance policy we could get on me? Probably not...." But I made it through that night and the next night, all the while re-running old memories from pre-transplant.

I didn't sleep for about six, maybe eight, maybe, um, twelve months before I got my transplant. I would come home from work and lie there, too exhausted to move but not able to sleep. Eventually I'd get up and make my way to the television and watch infomercials. It was strangely comforting. Of course,that's how I ended up the owner of a Jack LaLane juicer, a Magic Bullet, and a fancy breadmaker the name of which is lost on me at the moment. I almost got a Fix-it-and-Forget-it but I was on a all-juice diet for a while and I didn't see them fixing any fruit on that thing, so, no. I'd sleep for maybe an hour and then get up and go back to work. Teacher Man doesn't really understand why I enjoy the infomercials so much, but they are kind of...soothing. Does anyone else have a similar experience? If you're waiting for a heart right now, don't worry, you'll sleep again. Promise.

And in closing, I'd like to thank my three best friends, without whom I wouldn't have been able to get thru these past few weeks without their support, humor, and good natures: SuzieQ, Tink, and Big Russ. I don't know if Big Russ is going to object to her nome de plume, but I don't think she reads this blog, so I'm in the clear. LOL.

Obvious News

2010-05-24T19:32:00.001-05:00

There were actually scientists working on this project. Drawing a salary, collecting medical benefits, bragging at cocktail parties, "Oh, yeah, I'm working on really cutting edge stuff..." That reminded me of a good memory: A lot of kids right out of law school used to say that when we took them for their fancy lunch interviews, "Why do you want to work at our firm?" "Oh, I want to do cutting edge stuff." "Great! Like what?" "Uh...hm...you know...stuff that's cutting edge...stuff.." Oh, to be young and naive again! So in any event, here's what those scientists have finally realized:

Hot dogs, sausage, and bacon are worse for your heart than plain, unprocessed red meat. Check it out at this link.

Wow. If you didn't know that, you need to read more. Or just listen more. "Healthy people who tended to eat a lot of preserved meats like bacon, sausage, hot dogs and cold cuts were much more likely than those who rarely touch the stuff to go on to develop heart disease or Type 2 diabetes. " Id.

I think that's a basic premise of nutrition, the less nitrates, chemicals, and fillers you put into food, the better it is for you. Basically, a hot dog is a heart attack on a bun. Now, I'm not saying I don't enjoy the occasional frankfurter (with chili and cheese...or just sauerkraut and mustard....yuuummm....) However, here's the rub: Hot dogs are cheap. That's the problem. A single mom with a lot of kids, it's cheaper to feed them hot dogs than other unprocessed meat. The kids grow to enjoy the dogs and have no basis to make other choices when they leave the nest. It's an unfortunate side effect of poverty in America: Crummy food is cheaper than more nutritional heart healthy food. So, perhaps, it's a matter of helping to change lifelong eating patterns and trying to get this message across to those without access to the internet or NPR.

For those of you struggling to make ends meet, I'd like to suggest you check out Angelfoods Ministries, which provides monthly boxes of food for about half their supermarket value. Each month, the standard box contains lots of unprocessed meat. Just don't eat that smoked chicken sausage, okay? Or maybe eat half of it, if you're really, really hungry. And for those of you who aren't struggling, try to stay away from the bacon at the all-you-can eat buffet, all right? Your heart will thank you later.

Transplant News

2010-05-19T08:56:00.001-05:00

My goodness, there seems to be transplants and heart disease all over the news these days! It's fabulous! Or maybe, not so fabulous but really educational anyway. Here are some of the top stories in my humble opinion:

Research progresses to make bone marrow transplants easier and more useful for different types of medical conditions, including sickle cell anemia. The hope also is that someone with a less than perfect match can get a marrow transplant and also that kidney transplantees can get a marrow transplant from the same donor and then lessen their need to be on immunosuppressants. (Oops, I just remembered: Helen, take your immunosuppressants. Even almost eight years out it slips my mind sometimes. Especially when no one slept last night and Sissy woke up with the flu. Insert pause here to take pills...).

Okay, I'm back and all immunosuppressed. Soccer player Zac Herold was forced to retire before his professional debut in Toronto because he suffers from hypertrophic cardiomyopathy, a thickening of a portion of his heart that could lead to death under strenuous exercise. I really feel for this 17-year-old kid. He's worked so hard and his dream is within reach and then bang, "what do you MEAN I have a heart condition? I've already signed my Adidas contract!" Hang in there, Zac.

And closing on a good note: A Texas student awaiting his second heart transplant for cardiomyopathy made it out of the hospital to attend his senior prom at Grapevine High School (outside of Dallas). Next goal: graduation. We're pulling for you, Brad Stoner!

Okay, now go out there are seize the day! As for me, I'm going back to my coffee and dirty dishes.

SUDDEN CARDIAC DEATH

2010-05-16T10:50:00.001-05:00

You're really not going to believe what I'm going to tell you. You might think, "Oh, Helen With the Heart had a heart transplant, and her grandmother just passed away, and then she had that flu that knocked her on her ass, and now her dad is sick, wow, that girl has had her share of bad luck, I tell you, nothing else could happen to HER!" Au contraire, mon frere. On Wednesday night, our local hospital admitted Teacher Man for chest pains. I ask you, where the hell does a 41 years old guy get off having chest pains? Same place a 32 year old woman gets off having a heart transplant, I guess. Heart disease doesn't discriminate.

You might think I deteriorated into a quivering puddle of mush during this whole experience, but I was actually quite clear headed. When his boss insisted Teacher Man go to the emergency room, just because he looked like crap (sorry honey. And BTW, he doesn't often read this blog, which is probably a good thing), they quickly determined he had NOT had a heart attack. However, his blood pressure was OUT OF CONTROL. Despite the industrial strength drugs they pumped into him, it wouldn't respond. I'm actually surprised his eyeball didn't shoot out of its socket and go pinging around the room like a golf ball. This is where the doctors started to talk about keeping him for the night because they wanted to run a stress test and a fasting lipid test. "You know," I said, "can't his doctor run those in his office? Why admit him for a fasting lipid test?"

The nurse looks at me and says, "Well, we want to avoid . . . SUDDEN CARDIAC DEATH."

Blink. Blink.

And this is my internal monologue "Do you know how many times I've heard the words SUDDEN CARDIAC DEATH? I've OFTEN been in a hospital or at the doctor's office, disagreed with something they had to offer and then they pull out that old warhorse in an effort to scare me into compliance. SUDDEN CARDIAC DEATH hasn't worked on me since 1998. Yes, honey, it's been that long since I was cowed by SUDDEN CARDIAC DEATH. And you're pulling your trump card this early? I mean, we've only been talking for two minutes, the ER isn't really all that crowded, I've asked maybe three questions, I haven't even mentioned leaving AMA (against medical advice) and suddenly, you pull out SUDDEN CARDIAC DEATH? You don't even ease into it, it's just like, KAPOW, SUDDEN CARDIAC DEATH. Are you new to this? Is this your first patient? Do you remember that phrase from your training? ..."

But instead of saying any of that, I just burst out laughing and the nurse thought I was crazy. Teacher Man stayed the night, had all his tests, and now he's going to be fine.

This Conversation Truly Happened

2010-05-12T08:49:00.005-05:00

A few years ago, my mentor, a wonderful HTP named Don, and I talked to a group of teenagers about organ donation. We were in the "Q&A" portion of the schtick.

Student: "What was the worst side effect, you now, of your medications?"
"Well," said Don, "I have some short term memory issues, that's a bother. How about you, Helen?"
".... I grew a beard."
Silence.
Then, the entire class: "WHAT?"
"A beard," I repeated, nodding, "With full mutton chops."
"...!"
"You did NOT!"
"Yup....."
Dead silence.
Everyone, "daaaaaaammmmmmmmmnnnnnnnn......"

I put my waxer's kids through college. LOL.

Books on Organ Transplantation: Stiff

2010-05-11T18:01:00.000-05:00

My local library has a slim collection of books on organ transplantation. I, on the other hand, have many volumes I just have never been able to get through. A lot are written by donor families and ... well... it's just too much sometimes. I'm just sensitive that way. However, I just read a book discussing organ donation but not primarily focused on the topic: Stiff: The Curious Lives of Human Cadavers by Mary Roach. Stiff was a New York Times Bestseller.
Overall, I would say that this is not a book for donor families. While the book’s basic premise is that the body is just a hull, and that a cadaver is no longer the person we once knew it to be, I still got the overriding feeling that the book was not necessarily respectful of the dead. Sure, I know I use humor in this blog, but I hope I don't take the same...tone? perhaps? is that the word I'm looking for? When I was reading the book's chapters on organ donation, I felt very uncomfortable. I don't know my donor, nor her family. I do know one donor father pretty well (I once told him he has to be my adopted donor dad, since neither of us know who is on the other side of the equation). Describing his beloved and now deceased daughter's body as "being unzipped like a parka" (as Ms. Roach explains organ donation) is repugnant to me.

But perhaps that's one transplantee's view. Here’s a review from the New England Journal of Medicine (whether or not the author is a transplantee is not revealed. I'm guessing not):

Mary Roach certainly has an eye for the offbeat (and a stomach for the grisly). In Stiff: The Curious Lives of Human Cadavers, Roach, a columnist for Reader's Digest and the online news magazine Salon, surveys the uses to which corpses have been put over the centuries, along with some odd contemporary proposals. . . . Roach strives to be clear-eyed and matter-of-fact. "If you are inclined to donate yourself to science, you should not let images of dissection or dismemberment put you off," she says. "They are no more or less gruesome, in my opinion, than ordinary decay or the sewing shut of your jaws via your nostrils for a funeral viewing." The overall effect, though, is deflationary. There comes a point for all of us, Roach reminds us, when our bodies are no longer ourselves . . . . The well-being of the living depends in part on making use of bodies after death for physician training and the like. Roach's tongue-in-cheek approach to this material, however, makes it difficult to know why she has written the book and who her intended audience might be. This is not a scholarly treatment or the sort of book that one would take to the beach or display on a coffee table. Is she just out for laughs? Or does she have some more serious purpose in mind?. . .

Alan B. Astrow, M.D., N.E. J. of Medicine, 2003 (emphasis mine).

Stiff has two full chapters on transplantation. Chapter 8 is titled “How To Know You’re Dead: Beating-heart cadavers, live burials, and the scientific search for the soul.” The chapter starts out with the story of H, who is to be a beating-heart organ donor, or, you know, a regular organ donor. Roach first addresses the actual operation:

[The recovery surgeon] begins just above H’s pubic hair and proceeds a good two feet north, to the base of her neck. He’s unzipping her like a parka. The sternum is sawed lengthwise so that her rib cage can be parted, and the large retractor is installed to pull the two sides of the incision so that it is now as wide as it is long. To see her this way, held open like a Gladstone bag, forces the view of the human torso for what it basically is: a large sturdy container for guts.

Stiff, 149.

Are you cringing yet? ‘Cause I sure am. In fact, I’m in the fetal position under my chair as I type this.

Chapter 9 is prefaced by a picture of Frankenstein and is titled “Just a Head: Decapitation, reanimation, and the human head transplant.” It discusses whole body transplantation. In "Just a Head," which addresses a series of weird attempts to transplant animal heads, Roach offers the following advice: "My recommendation to you is that you never eat baba ghanoush or, for that matter, any soft, glistening food item while carrying on a conversation involving monkey brains."

It is not wrong to try to make a joke out of these matters. From Shakespeare to Philip Roth, comic artists have mined the graveyard for bitter laughs. Death is inconceivable; illness, among other things, often absurd. What physician has not felt an (embarrassed) need to guffaw about some dreadful event or condition? What these sorts of understandable responses call for, though, is an effort to get beyond dark comedy to some real emotional engagement.. . . . Roach's style, by contrast, seems sensationalistic. She correctly notes, "pus and snot, slime and gleet. We are biology." But composting human remains?”

Alan B. Astrow, M.D., N.E. J. of Medicine, 2003.

Others disagree. Even a quick look at the book on Amazon.com reveals Publisher's Weekly called it "uproariously funny."

"Uproariously funny" doesn't seem a likely description for a book on cadavers. However, Roach, a Salon and Reader's Digest columnist, has done the nearly impossible and written a book as informative and respectful as it is irreverent and witty. ... There are also chapters on cannibalism, including an aside on dumplings allegedly filled with human remains from a Chinese crematorium, methods of disposal (burial, cremation, composting) and "beating-heart" cadavers used in organ transplants.

There's the problem right there. Organ transplants lumped in with cannibalism and an aside of human-filled dumplings. Sheesh. So Stiff left me with a bad taste in my mouth. And I don't like dumplings.

The Green Bracelet & Plasticized Organs

2010-05-03T08:31:00.000-05:00

Has anyone seen these? It's the green bracelet used to show support for organ donation. I used to wear one all the time, during the "Live Strong" campaign. I passed them out during speeches, to friends, cashiers, whoever. They were very popular maybe 4 or 5 years ago. Goodness, has it been that long? Time flies. In any event, I thought I would add more pictures to my blog. I like to read blogs, especially the "pretty" ones, like angry chicken, but I have absolutely NO idea how to make my blog as nice as that. Well, she IS a graphic artist, right? Who can compete with that? Now, if we had a contest as to who can take over a multi-national corporation the fastest, I'm sure I'd come out on top. Sigh, why didn't law school give me any translatable skills? LOL, besides writing wills for my friends and composing kickass complaint letters? LOL.

On another note, the exhibit "Our Bodies The Universe Within" opened at the Stark Center in Austin. Check it out here. I'm fascinated by this exhibit, I have been since I first heard of polymer preserved bodies in Bodies: The Exhibition appearing in NYC at the South Street Seaport. I'm hoping I can get to see this one, but tickets are $21. That's a lot of money for me. I think I can find a coupon online, maybe. We'll see. But, you know, the more I learn about it, the more I think maybe it's not such a good idea to attend. Here is what you can learn at the exhibit:

Our Body: The Universe Within allows people to learn about their own bodies and, ultimately, teaches them how to take better care of their health and make positive lifestyle choices. The exhibition enables them to see and understand the medical conditions friends and family members face in a whole new way. The exhibits cutting-edge MicroWorld display features high-magnification images of healthy and diseased skin, organ and cell samples. The images under extreme magnification allow visitors to investigate otherwise invisible cell levels that impact our health.

Where do the bodies come from? Here's the rub:

The scientific, educational exhibition, Our Body: The Universe Within was developed and provided by the Anatomical Sciences & Technologies Foundation in Hong Kong. The specimens in the exhibition were provided by various accredited Chinese universities, medical schools, medical institutions, research centers and laboratories to further the goals of the Anatomical Sciences & Technologies Foundation which are to promote educational and medical research of the human body.

Acceptance of corpses (via donation by will or donation by the relatives) by the Chinese medical schools is the principle source of obtaining materials for medical anatomy and educational purposes. In China, all donors (or their immediate family members) are clearly told that the donated bodies will be used for medical research and educational purpose. Meanwhile, they are also guaranteed that all of their personal information will be treated as confidential.

So the "donor" families were told that the "donated bodies would be used for medical research and educational purposes." Granted, this exhibit *is* educational, but at $21 a ticket, isn't this more of a profit making venture? Plus, criticism comes from many different channels:

Roman Catholic Archbishop Daniel Pilarczyk called an exhibit that opened at the Cincinnati Museum Center “unseemly.” The church maintains that dead bodies must be treated in a way that recognizes each person’s dignity, he said.

Some states have considered legislation to ban exhibits that do not have proof of consent for use of the bodies commercially, and a bill recently introduced in Congress would outlaw the import of “plasticized cadavers,” a reference to the preservation process.

Many Dying to See Cadavers on Display, Texarkana Gazette, July 8, 2008.

Also, Wikipedia reports (footnotes omitted),

Questions regarding the origins of the bodies continue to be raised. In 2006, reporting from Dalian, China for the New York Times, David Barboza described "a ghastly new underground mini-industry" with "little government oversight, an abundance of cheap medical school labor and easy access to cadavers and organs. Premier representatives say "the bodies were not formally donated by people who agreed to be displayed." The director of the Anatomical Committee of the New York Associated Medical Schools (NYAMS) worries that "you have no documentation of who this is."

ABCNews'[s] program 20/20 produced a major report exposing the 'secret trade in Chinese bodies.' Claiming that bodies are sold on the black market for $300, the report spawned not only a series of other articles but also a Congressional inquiry, an investigation by the NY Attorney General, and the resignation of Premier's CEO Arnie Geller

I've been wanting to do a blog entry on China an organ donation for some time, but perhaps this can serve as a sneak preview. Ghastly mini-industry indeed.

Will New York Be The First?

2010-04-30T08:11:00.002-05:00

Will New York be the first state to enact resumed consent laws? That is, you donate your organs unless you specify otherwise. One New York State Assemblyman says YES!

Assemblyman Richard Brodsky believes the "presumed consent" measures would help combat a rising demand for healthy organs by patients forced to wait a year or more for transplants. Twenty-four European countries already have such laws in place, he said.

If he succeeds, distraught families would no longer be able to override their loved ones' decisions to donate upon their death. And eventually, hospitals would be able to assume the deceased consented to have his or her organs harvested, unless the person refused in writing.

http://www.usatoday.com/news/health/2010-04-29-organ-donation_N.htm?csp=34&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+UsatodaycomHealth-TopStories+%28News+-+Health+-+Top+Stories%29&utm_content=My+Yahoo

I look forward to seeing how this pans out. New York was my home for 37 years and while I dislike a lot aobut it, I believe New York is, and should continue to be, a trailblazer for ideas like this and others.

Interesting Transplant News

2010-04-23T17:33:00.001-05:00

Taking a cosmic shift from my personal problems, there's been a ton of news in the transplant community!

From Connecticut, USA Today reported yesterday that the Mayor of East Haven had donated a kidney to a Facebook friend! What a great way to celebrate Donate Life Month!

Mayor April Capone Almon is recovering after undergoing surgery two weeks ago to donate one of her kidney to help save the life of a Facebook friend. The recipient, who does not want his name used, is in his 40s and his kidneys were failing as a result of diabetes. The mayor said she decided to be tested and came up as a match The man is doing well.

Along with the first full face transplant reported in Spain, here's another link for an article brought to my attention by Dave Not His Real Name: Central Texas recently celebrated it's first implantation of a lifetime Heartmate II. The surgery was performed for a gentleman, at age 79, could not be listed for a heart transplant. Appearing on the front page of the Sunday Austin American Statesman (on April 10, 2010), the article is aptly titled, "Device Brings New Life to Patients Who Can't Get A Transplant." It was a fascinating article. Dave Not His Real Name expressed concern for my longevity upon reading that the average life span of HTP is only ten years, but I explained that really is an average, and all the factors that go into that average. Long story short, I plan to stick around for as long as I can with this new-to-me heart and then I plan to go back for seconds. Or is it thirds? Dave Not His Real Name was relived, but then we took our families camping together. Perhaps that relief turned into "Sweet MOG, another ten years with HER around?!" but who's to know? He's a good guy, I'm sure he'll deny it. LOL. Love ya Dave, Not His Real Name!

Now I will return to my interminable layover in Charlotte airport, where I will continue to hemorrhage more and more money for every hour they continue to delay my flight. Oh, how I wish they were still handing out free pretzels on the flights. Mmmmmm...

Funny Good Things

2010-04-22T15:51:00.001-05:00

As yes, I realize my last post may have been a bit depressing. But wait! I have been cheered up! I decided to visit the local grocery store while my dad was sleeping. I wanted to bake some cheesecakes to put in his freezer. He might not be able to eat them, but maybe my mom will, or one of my visiting cousins. You know how these things go, sometimes you just want something to take your mind off what's going on.

I park in the lot, but somehow, I hit the panic button on the key for the rental car. Ack. Lights, horns, people staring. My first thought, "Well, isn't this a fine how-do-you-do." My second thought, "Well, how do I turn this thing off?" I kept pressing the panic button, panicking, until finally, it shut off. Ah, phsew, good. I went in the store and my cousin out in Ohio called. I pulled my cell phone out of my back pocket (and this point becomes significant as you continue reading). We talked, I hung up, and then I finished my purchases. Checked out, went back to the car. No key. NO KEY. Where's the key? WHERE'S THE KEY! Turned out my purse, went through my pockets, nope. Nothing. Not there. Then it started to rain. Rain. Yes, it's raining. Do I even have an umbrella? Of course not. It's raining on me, my father is lying in a bed in the local hospital, and I've lost the key to the rental car.

So I looked up to the Heavens and I say, "Please. Just throw me a bone. Anything. I'll take anything you got."

And yes, God answers prayers. Because someone had found the key and turned it into the service desk when I went back into the store to ask for it. Thanks.

Not-So-Good Diagnosis Turns into Bad Diagnosis

2010-04-22T11:04:00.003-05:00

Hey y'all. Yesterday was one of the top 5 worst days of my life, but you know, there's no place to go but up. I have an old HTP friend who used to say "Any day I'm vertical is a good day." Here's to you Richard! I'm glad I've survived this long so I can be a support to my father and my mother.

Yesterday they said my father's prostate cancer has metastasized. It's now in his bone marrow. In addition, the cancer has caused a rare, hemophilia-like disease calleed hyperfibrolysis. The doctors are measuring my dad's life in months. Not even a year. He starts chemo today. Sigh. Any day I'm vertical...

I'm Incognito

2010-04-20T11:28:00.002-05:00

Yesterday I caught the first flight out of Austin and I flew to an undisclosed location in NY. I rented a car and I drove way past the speed limit to an undisclosed hospital. There, I went up to a room (I am not at liberty to disclose the room number, but it's on the oncology floor) and I surprised a man sleeping in the bed. A man who has asked me not to write about his problems in my blog anymore. LOL.

This morning, we met with his doctor. The doctor gave us a tentative diagnosis that, while not jump-for-joy great, was better than we had expected (not leukemia). Hanging out in a hospital is indeed emotionally wrenching, but I think perhaps I will work on some blog posts while I'm here, to keep my mind off .. whatever I need to keep my mind off of. I'm thinking most of my time will be trying to figure out little niggling details they won't take care of themselves, i.e., who will mow their lawn while the Unnamed Guy is incapacitated, who will start the casserole train, who can be a support system here in NY etc. I know, I know, I've already tried to convince them to move to Texas with me. In fact, that was the main goal of this trip. Buddy thinks they're coming back with me at the end of the week. Sissy's first question last night was "Did they say yes?" But the Unnamed Guy and I had a heart-to-heart this morning (heh heh heh, she said "heart to heart...") and he said he doesn't want to move. I respect that. From my experience, sometimes people want to be in familiar surrounding while they battle chronic illness. And that's okay. It might not be what I want, it might not be what my sister wants, but it's what he wants and I am willing to respect that.

The Unnamed Guy's wife, who I'll refer to here as "Mom," was worried about me being in a hospital. In fact, when she realized I'd come, this was the first thing she said, "Tell her to wear the mask." I'm supposed to wear a mask while in the hospital, but I think I've mentioned: I hate the mask. Mom kept going on about the mask until I finally said, "Mom, this is the safest place for me to be. I'm not catching cancer here."

SuzieQ mentioned me this weekend, in a sort of one-person intervention slash kick in the ass, that perhaps I needed to get myself some support in dealing with all the issues I've been dealing with lately. She's absolutely right. I just need to figure out what kind. Yoga, therapy, prayer,medication, reaching out to friends, all these have worked for me in the past. Today, I'm just going to spend it with the Unnamed Guy.

Austin Supports Organ Donation!

2010-04-14T16:05:00.003-05:00

I just received this from TOSA:

Next Thursday on April22, the City of Austin and Texas Organ Sharing Alliance will hold a press conference at City Hall to announce the city of Austin’s support for organ donation. Mayor Pro Tem Mike Martinez and other community leaders will make the announcement and encourage Central Texans to register their intentions to “Donate Life” on the new state registry, www.donatelifetexas.org .This is a huge initiative in which the City of Austin will also encourage their employees to learn more about organ donation and will provide opportunities for employees to do so in a variety of ways (which will be explained at the conference.)

Way to go TOSA! And thanks Austin!

Found my Heart

2010-04-14T10:43:00.001-05:00

A long time ago, I saw Dr. Mehmet Oz on the television (by the way, does anyone else think he had a little work done? He's looking pretty taut for a guy his age. And I don't think it's the walnuts he keeping stumping for all of us to eat). He talked about heart disease and pulled out two preserved human hearts, one in good condition and the other...the other looked like someone mopped the floor with it and put it away wet. It was ... mesmerizing. Dr. Oz explained that the person with the crummy heart probably had shortness of breath and\ , basically, congestive heart failure. I felt a strange affinity to that heart, thinking, hey, is that MY heart? I know, I know, it probably wasn't, although when I had my transplant I did sign away all my right to get my heart back. How do I REALLY know my heart was actually cremated as medical waste and not preserved for service as a circus prop for the Great and Powerful Oz? Huh. I'd actually PREFER that option. I might not be famous, but darn it, my discarded heart is! But then I found my heart here, and realized Oz doesn't have it. LOL.

I'll Remember This for My Next Transplant

2010-04-11T10:11:00.001-05:00

This found in O Magazine:

Using your favorite four-letter word at the right time can alleviate pain. A recent study published in NeuroReport found that participants who immersed their hands in icy water and were allowed to shout expletives experienced significantly less prickly, numbing pain than when they repeated neutral words. Researchers speculate that cursing activates the stress response, boosting the body's pain threshold to deal with crisis.

The Hidden Benefits of Anger, Cursing and Negativity, O Magazine, February, 2010.

I think my friends will tell you that I have no problem cussing. Once, pre-transplant, I engaged in a long, philosophical conversation with a nurse as I lay immobile in the hospital, about what was a profanity and what was an obscenity. It was a very amusing conversation. When I moved to Texas, yes, I toned it down a lot, but I still slip up. Now I have an excuse! It's good for my pain threshold! Yeah, baby! Whoo hoo! And really, there was a lot of pain associated with my transplant. A lot of pain. If you haven't had someone crack open your ribcage and yank out a major organ, you don't know what I'm talking about. I bet some well-place curses would help next time around. LOL.

WOW! It's April!

2010-04-06T08:37:00.000-05:00

March was a difficult month for me. With the deaths of my friend and my grandmother, and that crazy illness which continues to linger, I just felt like a dark cloud was following me. I want to thank everyone who offered me support, both here and in real life.  It's a brand new month, I lived thru March, and I'm tanned, relaxed, and ready to get back to being sunny ole Helen!

Recently, my dad asked me for my blog address. Um, sure dad, um....   I told him, hung up the phone, and immediately started wondering if I could get on here and edit, edit, EDIT before my father managed to type the address. He types slow, but not that slow. LOL. So I just sat there, cringing, until my father called me back and said it was "interesting." I tell you, I put this stuff out there so everyone and his grandmother can read it, but the minute I think my parents are reading it, hoo baby, do I start to sweat! It was like I was sixteen years old again and they were searching my underwear drawer, looking for pot and cigarettes (neither of which did I use, Mom and Dad!). Ah, good times, good times.

I wanted to talk a little about rejection. Someone commented on how frightened they were that their spouse could reject. I had a friend that would have her biopsy and freak for the two or three days it took to get her results back. I want to offer some perspective: You can do everything right. You can take your medication at the same time every day and never miss a dose. You can eat right and exercise. You can be the best patient in the world. And you will still reject. Because your body has its own mind. It will wake up and realize this is not your original heart. And it's better to reject early than later because if it happens, you know it's not a big deal. Really.

This is the way it was explained to me: After your biopsy, you are rated on 5 levels: 0 or 1a, 1b, 2, 3, and 4. Zero and 1a mean there is no rejection. Don't freak out if you have always gotten a zero and now you have a 1a. The nurses have no patience with that. THERE IS NO DIFFERENCE.

With a 1b and a 2, they will change your medications and you will take larger doses of prednisone for several weeks (you'll be moody. Trust me). But that's it. You're living your regular life, taking these extra meds, going about what you do, you go back and have another biopsy and hopefully, the rejection is gone. Gone.

With a 3, they admit you to the hospital. They give you IV steroids. You stay a couple of days. You get better. And you leave. And you go back to your life.

It's only with a 4 that you are relisted for a new heart. In 8 years I have not met anyone who had a 4 on a biopsy check. I'm sure it happens, but I haven't met one. I have a friend I like to call "Job" (and that sort of says it all, right?), and he;s rejected more times than I can count. He still works, takes care of his kid, and has his original transplanted heart.

My own experience is this: The first year I was out, I had a 1B. Mom, Dad, stop reading here, please, but I never told my parents. I knew they would worry, obsessively worry, and I would never get any peace until the second biopsy came back in two weeks, so I didn't say anything to them. My nurse, a lovely, lovely woman, said to me, "I know you're scared, but it's going to be alright." And she was right, it was all right. Two years later, I had a 2 (my folks don't know about that one either). I took the medications and again, it was all right.  Shortly after Buddy came to us in 2005, I had a 3. I knew it was a bad rejection because I could feel my liver. How can you feel your liver? You just know, "hey, that's my liver. And it hurts." I went in the hospital, I took the medications, and I was all right.

I guess what I want to say is this: Don't use your emotional energy to worry about rejecting. You're going to reject. It's just a fact. You haven't done anything wrong. Get past the blame game. If anyone asks, "What happened? What went wrong?", tell them nothing went wrong, it just part of what happens when you get a new heart. You are not going to lose your heart. Okay, now go drink your coffee and relax. Have a good week.

Please Pray For Randy

2010-03-30T12:57:00.002-05:00

I just got a phone call telling me that my friend Randy -- a fellow heart transplantee -- passed away last week, right before the Under 40 Support Group meeting (which I had missed). We were trying to get together for lunch, but one of us was always sick on different days. I regret we didn't have more time to develop our friendship. Randy only had his heart maybe three years. He was healthy.

Randy had a great sense of humor, he was resilient, he was a big fat grouch which totally made him my best friend in that group. He was 37 and he passed away from a pulmonary embolism. How does this happen? Why does it happen? Hanging out with HTPs is very difficult for exactly this reason. Damn.

The following is his obituary. Rest in peace, man, rest in peace.

Jeffrey Randall (Randy) Schaub, Jr. (pictured above with his cat, Mazzy), 37, of San Antonio, Texas, died on Mar. 23, 2010, in Austin, Texas. Born Oct. 3, 1972, in San Antonio, Randy was an artist and writer whose love of life, kindness and sense of humor touched everybody he met. Randy is survived by his beloved wife and best friend, Christien Bings of San Antonio; his mother, Kathleen Schaub of San Antonio; his father, Jeffrey Schaub of Kendall County, Texas; his brother, Michael Schaub, and sister-in-law, Leela Rice, both of Portland, Ore.; his grandmothers, Violet Schaub of San Antonio and Camille Guarisco of Covington, La.; and several cousins, aunts, uncles, and friends. Arrangements by A Simple Tradition, Austin. A memorial service for Randy is planned for Wednesday, Mar. 31, 2010, 7:00 p.m., at the Zilker Clubhouse at 200 Zilker Clubhouse Road in Austin. Donations in his name may be made to the Heart Transplant Endowment of The Seton Fund of The Daughters of Charity of St. Vincent de Paul, Austin, (512) 324-1990.

Published in Austin American-Statesman on March 30, 2010.

Tuesday's Links

2010-03-30T08:06:00.001-05:00

I've been collecting articles in the hopes of someday writing blog posts on them but today I think, "Let me just give these to people and they can read them (or not) themselves."

The new HeartMateII pump is the latest bridge to life!
Replacement bones grown in a lab!
The link to LifeSharers.
A circle of kidney donors!
The mob guy nicknamed Bobby Badheart! Thanks Donnie Brasco!

Ah, that feels better. Now I can start my list fresh. Thanks for reading! Oh, and I changed the color of the blog because, well, it's spring, and the deep orange, while one of my favorite colors, seemed too "fall-like" for this weather. So, today, green. Plus, April is Donate Life Month and green is the color of "the movement." Oh, you go, Helen.

What Happened Here?

2010-03-29T21:01:00.000-05:00

I have no idea what happened this weekend, but I thought I'd blog about it and try to make some sense of it all. It starts out this way: I was sick all last week. Fatigued, weak, really, really exhausted.

On Thursday I missed an event that I had been looking forward to for over 2 weeks: my Under 40 Support Group meeting. I had this sudden, terrible backache and a low grade fever. It was so bad, I couldn't even drive. I finally managed to crawl into my primary care physician's office.  He prescribed muscle relaxants. Nice guy. All copacetic, right? But while I was at my PCP, I realized I had gained 3 pounds in 3 days. That's a sign of heart rejection, as is low grade fevers. And sometimes, a backache is not a backache.

That night, I began vomiting. Bad. Hard. All night. That can throw off your meds, if you can't keep them down. Now I'm starting to freak out. And so is Teacher Man. Which is also bad. And hard.

On Friday morning, Teacher Man really started to freak out. He was my primary caregiver during the years pre-transplant and he said he was starting to see signs from that time. Like how I forgot to drive the kids to school and instead crawled into a warm tub and just lay there, listless.  He made me promise to call The Program and reluctantly went to work.

And this is what happened after I called The Program: My NP said she'd check with my doctor and call me back. Someone else called and told me I should come in for an echocardiogram on Monday morning. Basically I'm dying here and they're like, oh, yeah, wait three days and come in on Monday morning.  If you're still alive on Monday morning. Lol. The NP called me to confirm I had made the appointment for an echo. And that was it. As my mom said, "Why Monday? Why not today?" I don't know, Mom. I do not know. I was half out of my mind for vomiting my gut outs for twelve hours now, so I just went back to sleep.

No one told me to call my PCP. No one told me to go to the emergency room. No one said, "Hey, maybe it isn't your heart. Maybe it's something else."

So after a full day of drifting in and out of consciousness (SuzieQ said we spoke and I wasn't making any sense. Thankfully, she took my kids), Teacher Man came home at 5 p.m. to find me passed out in our bathroom. He immediately packed me up and took me to the emergency room associated with The Program.   My cardiologist and NP were (purportedly) on call that night.  I NEVER SAW EITHER ONE OF THEM. I NEVER HEARD FROM EITHER OF THEM. The ER gave me IV fluids and something to stop my vomiting and sent me home.

Throughout this whole day and night (it ended around midnight, when I was discharged from the ER), my cardiologist never spoke to me. She never called me. You were on call. I'm your patient. Would it have killed you to check on me, to say, hey, it's all right, you're not in rejection, it's not your heart, it's something else, don't worry?

Today I called my NP and asked if there was something I could have asked her on Friday to have changed the outcome. Why didn't you tell me to go back to my PCP? Why did you have me wait until Monday? I was passed out on my bathroom floor, incoherent. You were the last person to whom I had spoken. If I had died there, you would be Defendant A. And the cardiologist would be Defendant B. If I died, wouldn't you feel like you had failed me? (That last part I just said in my head).

Apparently, no. NP sleeps well at night.  She was clueless as to what I was asking her. She had set up my echo appointment, hadn't she?

What did I want when I called The Program?  Perhaps I wanted a plan of action. I wanted someone to say, "Well, damn, lady, get in here right now!"  Maybe  I wanted more personal attention. I wanted someone to care about whether I was unconscious or not. Maybe I'm thinking too highly of myself, but having a transplant is a big deal. It takes a lot of care. On my part and I thought, on the part of my medical team. This Program does about 30 heart transplants a year.  Nationwide, 2200 are done a year. A year. Thats not a lot of people to care for. Teacher Man and I both agreed, if we were back in New York, my Original Program would have me come in the minute I called, hooked me up to IV fluids, given me a heart biopsy, admitted me and had me on enhanced load of steroids before the NP here in Austin called me back the first time.

So I'm still trying to process everything, the change that happened when I moved here, the way people talk, the way I talk, but ultimately, the NP and I agreed that I would request a new care team. Which I'm happy about because, to tell you the truth, I don't want either one of these jackasses near my precious, precious heart, ever, ever again.

Steve Jobs Talks About his Transplant

2010-03-23T07:06:00.000-05:00

A good friend alerted me to this tidbit about Steve Jobs stumping for organ donors (Thanks Dave-not-your-real-name!) Steve Jobs, CEO of Apple Computers, joined Gov. Arnold Schwartznegger recently to speak out for more California organ donors to register (AND ACTUALLY DONATE), reports ABC News. As you may recall, Jobs received a liver transplant in Memphis last year. Why Memphis?

Last year, Jobs flew to Tennessee to receive a liver transplant, and spoke briefly of this. "There were not enough livers in California to go around," he said, according to the San Jose Mercury News. "I was advised by my Stanford doctors to enroll on a list at a Memphis hospital, because it was more favorable to get a liver there. I was fortunate."

Sang Tang, Steve Jobs Helps Push Organ Donation, Tuaw, The Unofficial Apple Weblog, Mar. 19, 2001.

While Jobs was the sickest person on the list in Memphis, his money and power helped him be more mobile and upped his chances of survival:

They added that his money and mobility may have improved his odds either by going to an area of the country where there are more organ donors and fewer patients waiting, or by signing up at multiple transplant centers...While relocating to a new hospital for better odds and or signing up for multiple transplant centers isn't breaking UNOS policies, ethicists and patients have previously criticized the practice as unfair.

"It's not for anybody but the rich. It's called multiple-listing, a practice some would say is unethical," said Arthur Caplan, co-chair of the United Nations Task Force on organ trafficking and chair of the department of medical ethics at University of Pennsylvania.

Dan Childs and Lauren Cox, Steve Job Opens Up About Liver Transplant at Apple Event, ABC Medical News Bureau, Sept. 9, 2009.

I don't blame the guy. Who wants to die? I sure don't. If I had the money, maybe I'd try to multiple list. But I'm broke as a churchmouse so that decision is already made for me. LOL. Talk it up Steve, tell everyone to become a donor.

Dog and Me

2010-03-21T14:24:00.001-05:00

Well folks, spring break is here in Austin. Teacher Man chaperoned a school trip to, of all places, New York City, so the kids and I went on vacation alone! Exhausting, yes, but fun. I needed to find somewhere to stash my dog for a few days, and a friend of mine offered to take her. Thank goodness. Bits is not a dog you can board. Perhaps it's me. I had a dog growing up and we boarded her for a week while we went to Virginia Beach for a summer vacation. That dog was never the same after that. He went in complete normal and came out a broken dog. Bits, to start with, is a neurotic mess. But I still adore her.

When I first got diagnosed with heart disease, Teacher Man got me a dog. He'd read somewhere that people with dogs live longer than people with just heart disease. Bits and I bonded over my cardiomyopathy. I'd lie on the couch, exhausted, and she'd lie on my chest. It was comforting. She slept in our bed, and Teacher Man and I took her to the park during the early morning hours. She was the perfect first child.

Well, not really. Bits turned out to be one crazy-assed dog. But hey, I had money and no kids, who was I going to spend my cash on? I hired a doggie psychiatrist. I tried doggie herbs. I burned thru every dog walker in downtown Brooklyn. Nothing helped calm her down. Basically, Bits and I were blackballed up and down the eastern seaboard. My boss suggested I change my name, change the dog's name, and go underground. LOL.

But that was years ago. Now Bits is twelve, we've moved to several different locales in an effort to hide her indiscretions (one of which, was pooping in doormen buildings. Yah, I know...), and she seems content now. Bits's mother was a German Shepard mix, and there are hip dysplasia problems, plus arthritis and they age. My folks are after me to put her down. For goodness sakes, that dog can't even belch in front of my parents without them saying, "You hear that! That dog's gassy! You're going to have to put her down! Don't make her suffer, Helen!" Sigh. my folks can be so melodramatic sometimes. I told them the only time I would euthanize her was when she lost control of her bladder. I promised that dog she wouldn't go out in diapers because, hey, *I'm* not going out in diapers and neither is she.

Last week Buddy, my six-year-old, tried to frame Bits by urinating in the hallway. Yes, that's right, he peed right in the middle of my hallway and blamed the dog. Why? I don't know, he's just a crazy-assed kid. I was just beside myself, thinking poor Bits had finally lost her bladder control, crying, hugging that dog and then, suddenly, I thought, "waitaminute..." LOL.

World Kidney Day

2010-03-13T17:55:00.002-06:00

is Today! Or rather, it was when I wrote this post. LOL. Thursday, March 11, 2010 WAS World Kidney Day! But hey, I'm an HTP, not a KTP, so what the heck do I care if I missed it? Sorry, KTPs, ya know I love ya. Honor your kidneys by drinking lots and lots of water today. Oh, I jest. Here's the website from the National Kidney Foundation, please take a look and educate yourself about the signs for diabetes, your risk of kidney disease and host of other issues, or just send out a World Kidney Day e-card (I know I am! LOL). Interesting fact you may not have known: The majority of the US waiting list for transplants are waiting for a kidney. Of the almost 115,000 people now registered on the UNOS transplant waiting list, almost 90,00 are waiting for a kidney! What? Yes, you read right! And they can get a kidney from anyone who matches them! Brothers, sisters, parents, friends, waiters, ministers, whoever is generous to pony up a kidney. So there you go.

I also wanted to thank everyone who sent me condolences on the loss of my grandmother. I appreciated every single one of you.

My Nana Died Today

2010-03-08T17:28:00.001-06:00

Hi all. My grandmother passed away this morning, at age 91, in a hospital in Pennsylvania. She had been suffering from Alzheimer's disease for some time.  Two days ago, she aspirated vomit into her lungs. We knew the end was near. As you might imagine, I'm sad about her passing, but I know my grandmother lived a full life and was ready to go toward her Heavenly reward. I'm glad her pain and suffering has ended and I believe she has gone to a better place.  We'll all be together again someday.

When I first became sick with the virus that ultimately killed my heart, Nana told me this story of her own mother, Anna:

Nana's mother had a cousin who fell in love with her. He asked her to leave her husband and children and run away with him.  Anna looked at him and said, very much like Nana or I would say, "What are you, crazy?" Apparently, he was.  He became deranged, dragged her into the woods, and shot her. But for the screams of the passersby, she would have been killed.

Everyone in town lined up to donate blood for her. This was in the early 1920s, so it was a miracle she survived this attack. When they sentenced her cousin to jail, he swore that if he were ever released he would hunt Anna down and kill both her and her children.

Ultimately, the stress took a toll on Anna's heart. She moved her children around, hiding them, hoping to keep them safe. Ultimately, she died at age 32.   I was the same age when I received my new heart.

I asked my grandmother what had killed her mother and she said, "Her heart became weak. Her legs were swollen." That's about the best diagnosis you can get in 1925 Naples. I thought this went a long way toward my understanding of how I became sick. One day my legs swelled up. I was in congestive heart failure. In 2002, modern medicine was able to save me. My great-grandmother died.

Nana once said to me, "Don't even think of dying before I do." And I haven't.

I loved her very much.

Self-Disinfecting Stuff

2010-03-02T19:03:00.002-06:00

Hi folks. Sorry for the absence, last week was hard on my arthritis and I found it nearly impossible to type. What, you say, Helen you live in Austin Texas! The land of milk, honey and unending sunshine! Well last week we had a freaking SNOWSTORM. Big puffy flakes of snow that STUCK. And me, dummy dummy me, said to myself, "oh, self, you're from New York, you know how to drive in snow, puh-leeze, just get on the highway and hit the Costco. No one is bound to be there!" And I didn't think, Austin doesn't have salt trucks. Yes, they have a salt "truck" but it's a truck, a pickup full of salt and a guy with a shovel. And he covers Austin, Round Rock, Bastrop, Hutto and Taylor. And Pflugerville. And I thought, as I skidded down the freeway, leaning out the window and screaming at people who had not seen a flake of snow in their lives, to lay off their freaking brakes before they kill someone, "Well, Helen, you're really dead now." Oddly enough, I made it out safely and in one piece. Except, you know, for my heart, which is now a pile of rubble in a medical waste crematorium. But I digress...

This is what I wanted to share today, besides the news that you should definitely wash pre-bagged lettuce whether you have an immune system or not: They now make a self-disinfecting wireless mouse. Wow! What a boon to the germophobic person lacking an immune system! I really wish the powers that be made tv remotes and phones out of this stuff.

Pay Bone Marrow Donors?

2010-02-23T20:38:00.001-06:00

Yeah, I can't believe it either! But here's an article about a lawsuit to encourage payment, including, among other plaintiffs, moremarrowdonors.org, which wants to arrange a pilot program to give donors $3,000 in scholarship money in exchange for their marrow. Perhaps this is the wave of the future. You can sell your eggs and sperm, get paid for giving plasma, and we continue in our monstrously consumerist society, fewer and fewer people give to charity, volunteer to help those in need, and ultimately donate their marrow and organs without remuneration. The world is a cold, hard, money-driven place sometimes.

And yes, happy day, I figured out how to spell check my posts again. Yay.

Totally Off-Color Transplant Joke

2010-02-19T07:55:00.001-06:00

The whole Austin plane crash has affected me. I shook like a leaf just watching the news last night. It just woke up a lot of bad memories for me. Memories I hoped were stuffed way down deep into my subconcious. A lot of people say "9/11 was the worst day of my life," and I always take that with a grain of salt. Ninety five percent of the time, that person watched it on TV, far, far away from the event. And that can affect you, sure. Unfortunately, I was there, right there, and it was bad. Really, really, unspeakably bad. But I have a lot of friends who were very understanding and supportive last night, Teacher Man came home early and we shared some PTSD moments (Teacher Man worked across the street that day), and I went to bed.

This morning I woke up and I realized, look, Helen, it's not all about you. You weren't there yesterday, you're safe, your family is fine, think about the people who are really affected by this, and get on with your life. Stop. Just stop. Once a friend told me, there is no past, there is no future, there's just today. It's a gift. That's why it's called "the present." So in an effort to cheer myself up, I found this VERY off-color transplant joke. Stop reading here if you are easily offended. Stop. Right now. This is your last warning. Okay, here it is: Did you hear about the penis transplant? The hand rejected it.

The Optimist's Creed

2010-02-18T15:33:00.001-06:00

Today, in Northwest Austin, a disgruntled software engineer with some damn beef with the IRS crashed his single-engine plane into federal office building . A good friend worked two buildings down. Thankfuly, she's all right. SuzieQ remembered that Teacher Man and I had witnessed 9/11 and were worried this incident may trigger bad memories for me. Yes. Yes, it did. I'm a little freaked out about the whole thing. That's why I thought of the Optimist's Creed. I find it inspiring sometimes. To be an HTP you have to be something of an optimist. Okay, here is the poem:

Be so strong that nothing can disturb your peace of mind.
Talk health, happiness, and prosperity to every person you meet.
Make all your friends feel there is something in them.
Look at the sunny side of everything.
Think only of the best, work only for the best, and expect only the best.
Be as enthusiastic about the success of others as you are about your own.
Forget the mistakes of the past and press on to the greater achievements of the future.
Give everyone a smile.
Spend so much time improving yourself that you have no time left to criticize others.
Be too big for worry and too noble for anger.

...from "Creed for Optimists" by Christian D. Larsen

And now, I will leave you to retreat into my little PTSD bubble. Goodnight.

Wear Red (AGAIN)

2010-02-17T08:57:00.000-06:00

This is Teacher Man's Wear Red

for Women's Heart Health Day outfit. Sigh, that's my man! He was a little surprised at how many people didn't get it.

My Valentine's Present

2010-02-14T09:19:00.000-06:00

Valentine's Day is pretty huge for the HTP community. It's big around here. Here's my Valentine's present.

Very funny, Teacher Man.

Heart Disease Doesn't Discriminate

2010-02-12T13:34:00.001-06:00

Because even the rich and famous get heart disease. Yesterday, New York City's Columbia Presbyterian Hospital admitted former President Bill Clinton with heart trouble. Mr. Clinton left the hospital today after having two stents inserted into his clogged arteries. Before you go saying, "He never got off those McMuffins," commentators on the "Today" show adamently stated this incident was not caused by his diet or lifestyle. Perhaps, the reporter said, it came from genetics and his early diet. And by "early" I mean, "for goodness sakes, the guy grew up poor in Arkansas." Light reading on the topice here.

In other news, former U.S. Representative Charlie Wilson, of Lufkin Texas, the real life inspiration for "Charlie Wilson's War," starring Tom Hanks and Julia Roberts, died yesterday. Read his obituary here. Mr. Wilson received a heart transplant in 2007. I think in order to receive a new-to-you heart at age 71, you have to be a Congressman and live in East Texas. But mine is not to reason why. Mr. Wilson got three extra years from his new heart and I know that means something. Rest in Peace.

Flash Cards

2010-02-09T19:12:00.001-06:00

While I was in the hospital waiting for my heart, I spent a lot of time with a tube down my throat. How do you spell that? Entubated? Intubated? Whatever it is, it sucks to regain conciousness and not be able to speak. At least for me, I'm a yapper. LOL. I think if I go into the hospital again, I'm going to make up a set of flash cards. They used to hold up an alphabet sheet for me and ask me to point out words sometimes. I'd want to say "What time is it?" I'd try to point to "T" and because I was so weak, I could barely lift my hand, so I'd land on, say, "p" "x" "e" and the whole staff would be going, "She wants pixie sticks. Pixie sticks? Why would she want pixie sticks? Do we have pixie sticks? She's crazy, wanting pixie sticks." No! I don't want your damn pixie sticks! Besides my voice and my hand-eye coordination back, I want the time! The time!

Good luck getting your glasses. Or more morphine. Or your husband. Sheesh.

Back to my flash card idea, I think I'll make flashcards that say "yes" and "no" and "thank you" and some ones like, of course, "glasses" and "time" and "husband" and I think I will make one that says "priest" When I tried to signal that particular request it launched a twenty minute tirade on the Catholic Church by three nurses who, for some crazy reason, thought I was both mute AND deaf. Double sheesh. Maybe I need a card that says, "Yeah, I can hear you."

It's Wear Red For Women's Heart Health Day!

2010-02-05T07:56:00.001-06:00

Today is the American Heart Association's Wear Red for Women's Heart Health Day! Last night Project Runway had a challenge for their designers based on the color red and the brand of one well-known condensed soup company. This morning, all the hosts of the Today show wore red too! And my entire family! Let's raise awareness:

HEART DISEASE IS THE NUMBER ONE KILLER OF WOMEN IN AMERICA.

Do you think I should put that in bold print?

HEART DISEASE IS THE NUMBER ONE KILLER OF WOMEN IN AMERICA.

How about really big?

HEART DISEASE....

Okay, you get the picture. I have nothing against the pink crowd, I really don't, but maybe heart disease in women needs to hire their press agent. According to the American Heart Association, "[n]early twice as many women in the United States die of heart disease, stroke and other cardiovascular diseases as from all forms of cancer, including breast cancer." In 2002, 360,000 women died from heart disease. Forty two thousand died of breast cancer. Don't you think you should watch your cholesterol now? Put down that Big Mac and put on something red.

Presumed Consent Petition

2010-02-04T15:47:00.002-06:00

I spend time on Facebook. It's not a bizarre thing for a forty year old woman with two kids. In fact I was the designated driver recently for some friends and there were a bunch of people at the other end of the bar discussing Facebook. Oh, how our social circles have shrunk as we age. But hey, it's probably better than online gambling. LOL. Recently, I came across a petition website through Facebook. The Petition Site. Snappy. I signed the petition for "presumed consent" here in the US.

Presumed consent for organ donation is a policy whereby everyone is an organ donor. Period. You don't have to sign your driver's license, you don't have to tell your next of kin, your family doesn't have to agonize whether they're making the right choice, that's it. You are, I am, we all are. UNLESS, a person takes active steps not to donate, like, for instance, writing it on their driver's license. Many people, including the Presumed Consent Foundation, believe enacting this law might end the shortage of donations. According to the Foundation's website, only 2% of people in countries with presumed consent laws opt out. In addition, taking the question out of the hands of the next of kin, who are already struggling with the loss of a loved one, is not only beneficial to organ donation, but just kinder, more humane. And I think if a person was strongly against donation, it should be incumbent on them to write it down, and not vice versa.

If you agree with this idea, please go to the Petition Site and sign the "Support a "Presumed Consent" Law for Organ Donation" petition at http://www.thepetitionsite.com/1/support-a-presumed-consent-law-for-organ-donation. Considering how I am the 40th person to sign, and they're shooting for 100,00 signatures, there is a way to go. I don't think I will see presumed consent in my lifetime, but maybe someday ...

Friendship and Hospital Worker's Hands

2010-02-01T08:21:00.000-06:00

Okay, those two things have nothing to do with each other, but it's what I'm thinking about today, so there! LOL. I recently read that only 40% of hospital workers wash their hands as many times as they are supposed to. Yikes! Do I think that's a reason to go all Big Brother on them and make them wear badges that track how many times they've washed? I don't know. It could save lives, but it seems so intrusive.

I wanted to talk a little about friendships today. I've been having some friendship issues in my life lately. Last night, Teacher Man said, "Oh for goodness sakes, how many times do I have to validate your position? Why don't you just blog about it!" LOL. I given a lot of thought to how my friends behaved during my illness and transplant. I wasn't a very good friend during my illness. I guess having congestive heart failure just takes it out of you. I often say this is my theory on why New Yorkers are generally so rude. Have you ever ridden the subway during rush hour? In the summer? In your suit and hose and your briefcase and coffee? The commute to work just exhausts people. They have nothing left to be kind and polite. Living with congestive heart failure is kind of the same way. You're exhausted, you can't breathe, you're dying from the inside out, there is yet another set of stairs in front of you that you just don't know how you're going to climb them, and a friend calls for lunch. What? No! Argh.

I lost a lot of friends during that time, and I honestly don't blame them. When someone pushes you away, the easiest thing to do is stop. Stop calling, stop asking, just put them out of your mind and leave them alone. The harder thing is to push back. Looking back, I actually appreciated my friends who kept calling. The ones who didn't give up on me. The ones who told the nurses, "I don't care if she doesn't want to see me, I'm going in there. Don't try to stop me," (thanks Annie). Even the ones who told me, "Stop, you're being an asshole." It's difficult to tell someone what they need to hear. I'm very appreciative. Now.

And since we're talking about friendships, I wanted to thank SuzieQ for picking me up after my angiogram last year. I was still pretty sedated and I can't remember what I said in her car on the ride back, but she said I sang. Yikes. That's a true friend.

Kid in My Daughter's Class

2010-01-27T08:03:00.001-06:00

This kid in my daughter's fourth grade class right here in Round Rock, Texas needs a small intestine transplant. Isn't it strange how I run into these things? Once I gave a speech at a high school and one of th students asked me, "How do you KNOW all these people you're talking about?" LOL. I said I'm active in "the movement," but really, remembering and connecting with people is a skill highly prized by lawyers. I consider myself lucky to have such a big community of people touched by transplantation to call my friends. In any event, Ryan, hopefully, will be one of a hundred people (you read right, 100 people) to have a small intestine transplant this year. His family's insurance is going to cut him off soon (um, health care reform anyone?). Unfortunately, even AFTER a transplant, there are a lot of bills to pay, and medication isn't cheap (as I mentioned yesterday). Here's the email we received. If you are so inclined to contribute, please do, or just keep them in your thoughts and prayers, which is free and easy.

I recently received the following information from our church who is helping raise money for Ryan Tomlinson. The people who are coordinating the website have not added all of Ryan’s story yet, but will hopefully do so in the near future. Please pass this on to those you think may be able to help. I know Ryan and his family will deeply appreciate your help. Thanks, Kathy Bobo

Ryan Tomlinson turned 10 years old on Monday, January 18th. Ryan is in need of a life-saving small bowel transplant. You may not know that Ryan’s family has already exceeded over one million dollars and are approaching the maximum financial funds his insurance company allows in a lifetime.

In honor of Ryan's10th birthday, please consider making a $10.00 tax-deductible donation towards the estimated $75.000 that Ryan’s family will need to pay for his life-saving surgery and other medical expenses that his insurance will not cover. Then pass this on to 10 of your friends. You can read more about Ryan’s journey and donate directly at http://cota.donorpages.com/PatientOnlineDonation/COTAforRyanT/. Funds raised go to Children’s Organ Transplant Association (COTA) in honor of Ryan Tomlinson. All gifts donated in his honor will be available for transplant-related expenses.

$10 from 10 friends to help save a 10 year old’s life!

Our goal is to reach $10,000 through this birthday challenge and we will, with your help!

If you prefer to write a check send it directly to COTA- Memo line should state in honor of Ryan Tomlinson

Good Records Equal Saved Money

2010-01-25T10:47:00.000-06:00

Heart transplants cost money. No one is working for free. Ultimately, my transplant cost my insurance company $1.5 million dollars. In 2002. Ack. Where's my bionic arm? Where's my bionic ear? Most of the bill will be picked up by your insurance, but there are still a bunch of deductibles and THEN there is the cost of your meds. For most of us, meds run several hundred dollars a month WITH INSURANCE. I have several prescription where my share is $30 a month. Times 5, that's a lot of cash on a regular basis. How can we offset the costs? Here are a few articles from my favorite frugal resource, the Dollar Stretcher, including this article which talks about good recordkeeping.

Recordkeeping is a must for everyone going through a transplant. I had a friend who was NUTS about writing down who she talked to and when. She kept all her info in neat, chronologically organized, color-coded binders and always had easy access to them. You might not be as anal-retentive as Kerry, or you might be like me and spend your hospital stay in a semi-coma and not be able to write down who saw you and why, but I would suggest putting someone else in charge. If I was smart, or perhaps more prepared for this whole shindig, I would have given my parents a notebook and told them to keep track. They came to see me every day and could have used a project to keep them occupied.

Once you have a record, or even if you don't, it's important to be assertive. You're going to have to talk to people, negotiate billing or discounts. Once, pre-transplant, I saw a neurologist that wasn't covered by my insurance. I got a $600 bill. I didn't know any better, so I paid it. Quite frankly, I don't think 20 minutes of a doctor's time is worth SIX HUNDRED DOLLARS, but I could have talked to his billing office and tried to arrange an insurance discount. It's important to realize that the doctors don't handle billing. Don't demand to talk to the doctor. She doesn't care. It's not her job. Really. You'll get nowhere. But after my transplant, I made a stock letter that went out to every doctor's office that sent me a letter that said this: "Dr So-And-So doesn’t take you're insurance, so you owe him thirty five thousand dollars." And the letter read something akin to: "My husband spoke to Mrs. X at this hospital and she agreed that the hospital and everyone related to it would take our insurance. You're an agent of that hospital. You'll be satisfied with the insurance pay-out. If you have any questions, talk to Mrs. X." I never heard anything back and I didn't pay thirty five thousand dollars.

Also, you (or your representative) have to be assertive while in the hospital. Do not be shy. Once, I had a doctor (another effing neurologist) say "You don't need this test, it's painful and it's not going to tell me anything I don't already know." Seven years later, I remember that guy's EXACT words. It was a rare lucid day. Later in the day, several nurses or some such other medical professionals entered my room, told me they were going to perform the test but not to worry, because all I had to do was lay back and let them stick pins in me. Well, friends, let's just say I went ape-caca. I was so angry. Doesn't anyone communicate in that place? I said something akin to: "No, I refuse. I refuse this test.... I'm within my rights. I know my rights.... I don't believe you. If that doctor wants me to have that test, have him come back here and tell me why he changed his mind .... I don't care that he's busy. You're wrong. Get away from me....GET AWAY OR I WILL HAVE YOU ARRESTED..." Suffice it to say, I didn't have that test (and they didn't charge me for it!) My parents were, of course, in my room at the time and my dad turned to my mom and said, "She's feeling better."

All My Dignity: Lost

2010-01-21T16:12:00.000-06:00

There is no dignity in getting a heart transplant. There just isn't. I went in with a healthy sense of confidence, maybe a little neurotic, sure, but I came out broken.  Every shard of my dignity: Gone. Today, I shared this story with some other HTPs and thought you might enjoy it.

While I waited for my heart, I was placed on the old-fashioned biventricular assist device, the big kind that immobilized me. I couldn't get out of bed, so basically the nurses had to bathe me and take care of my ... um ... toileting needs. I almost welcomed my kidney failure because it was one less thing I needed to do in front of an audience of ten thousand nurses. And let's not forget the doctor who wouldn't wait for the nurses to clean me up before he paraded his team of interns into my room. Ah, yes, and there I was, immobile and just lucid enough to realize I am laying in a pool of shit and there are other people in the room staring at me. Lovely.  LOL. I have to laugh about it now, otherwise I'd go back there with a crowbar and a picture of his Benz. (Yeah, that's a joke. G-d forbid anything happens to that guy's car, I'm the first one they come for...)

One day they moved me to "the step down unit," from ICU. The step-down is a unisex, four-bed area. The team of nurses was "prepping" me, i.e., giving me a sponge bath and weighing me, taking vitals.  Remember, I can't move. I look over to my left, and the man in the bed next to me has pushed the curtain aside.  He's looking at me. And, as Radar on M*A*S*H once said, all my "nekkidity." So I say to the nurses, really softly because I had been de-entubated a few days before and my throat was still sore, "Um, that man, I think, is peeping at me." "What?" "That man. I think he's peeping at me." So this one nurse looks behind her, sees that I'm right, and pulls the curtain closed.  The peeper opens it again. She pulls it closed. Basically, I remember this conversation going something like "Stop it, Mr. Smith ... stop kicking me, Mr. Smith ... I said stop it, stop! SECURITY!" In the end, security came and carted Mr. Smith away, handcuffed to a wheelchair.   I thought, at the time, that was DAMN hilarious. You got YOURS, Smith. The nurses apologized but I was kind of like, "Eh. It's not something everyone in this entire hospital hasn't seen before."

The next day, my mom walked by the social work office and heard them talking about Mr. Smith and how they hoped I "wasn't going to sue." I'm sure my mom freaked out (because that's what she does best), but she didn't let on, probably because they told her not to "upset" me.  Please, I was on so many drugs it would have taken Lord-Knows-What to upset me. And if this guy staring at Naked Me isn't upsetting me, what will? LOL. The head social worker paid me a surprise visit and patted my hand and made nice. I couldn't understand what the big deal was. Weeeelll, later I found out that Mr. Smith (not his real name) had a wee bit of history. So they put a woman who can't move and can't scream in the bed next to him? Sheesh. I should have sued. But I didn't have my heart yet and didn't want to risk it. LOL.

Belgian Waffles and Windpipes

2010-01-15T08:39:00.000-06:00

I've never met a Belgian I didn't like. During my freshman year of college I took a literature class taught by a Belgian grad student named Stefaan. Yum. He only wore white, navy blue, and grey. For some crazy 18-year-old's reason, I thought that was cool. My first therapist also was Belgian. Double yum. And let's not forget their waffles. And their chocolates. And, of course, now their transplants!

Belgian Linda De Croock had two metal stents implanted in her throat to prop open her windpipe after a car accident crushed it. To assuage her discomfort, doctors tried a new procedure and inserted a donor's windpipe in her arm. This was done in an attempt to get her body to accept the tissue before it was implanted in her throat. IT WORKED! She has a new windpipe AND she no longer has to take immunosuppressants!

Words of Wisdom and Clancy Brown

2010-01-14T09:50:00.000-06:00

Today wasn't such a great day. It just didn't come together the way I had hoped. Perhaps tomorrow will be better. As an old HTP friend once said, "Any day I'm vertical is a good day." I was trolling around Facebook for a while, looking to get my mind off my troubles with some mindless entertainment (you will come to see that this post is full of my quest for "mindless entertainment,") and I came across this "Italian proverb." I've never heard this one, but I actually enjoyed it:

"At the end of the game, the king and the pawn go into the same box."

Think about it. Interesting.

Anyway, this weekend I was sick (AND TIRED!) so I lay in bed and watched some "Netflix on Demand." I played the 1983 flick "Bad Boys," starring Sean Penn and Esai Morales in part because Netflix thinks I like "gritty crime dramas." Which I do. But then again, it also thinks I like "cerebral movies," which I'm kind of embarassed to admit, I do. Okay, back to "Bad Boys," one of the characters in the juvenile detention facility to which Sean Penn was sentenced, looked vaguely familiar. Later, I flicked on some Lifetime TV (I think it's pretty obvious that when I'm sick the only thing I like to do is engage in mindless entertainment! LOL). I watched "Love, Lies, and Murder," in its whole craptastic entirety. "The Viking" from "Bad Boys" starred in this movie as well and I remembered he was also in "The Shawshank Redemption." Clancy Brown! I looked him up and found out, not only is he the voice of that dang Eugene H. Krabs in SpongeBob Squarepants, but he also has a connection to an HTP.

In 1999 he spearheaded a charity campaign to raise funds for J. Madison Wright, the young girl who played his screen daughter in the TV show "Earth 2" (1994). Madison, then aged 15, had developed cardiomyopathy and was in dire need of a heart transplant.

http://www.flixster.com/actor/clancy-brown

Madison Wright received her new heart but unfortunately passed away eight days before her 22nd birthday. I think it's strange how I don't got out looking for these connections, but somehow, they find me. Mysterious ways, mysterious ways. Now back to the Lifetime Channel. LOL.

Post-Transplant Illnesses

2010-01-12T18:51:00.000-06:00

I haven't been feeling well lately, in part because it's cedar season here in Austin (ever hear of "cedar fever?" It's baaaadddd.) and in part because it's been super cold. For Austin. I know, I know, it's relative. My cousin in Macomb, Illinois said they had just climbed to -4 degrees F (from -6!). This morning, my windshield was iced over. Slightly. LOL. So I pulled out a credit card, scraped it off, and then put on a sweater. As my cousin lost her dog in yet another snowdrift. MWAHAHHAHAH. Ahem...

The warm weather is one of the reasons we moved to Texas. Teacher Man has never liked snow, which is surprising for a guy who grew up in West New York. My medications also put me at an an enhanced risk for arthritis. Perhaps I shouldn't say "enhanced risk." Perhaps I should say, I'm 40 years old, slim as a rail, and I have the bones of an 80 year old because the immunosuppressants I take leech calcium out of my bones like a sieve!!! Some days I can't even type, my fingers hurt so bad. This post is going to take me a few hours to finish. Sigh. But enough griping, its a small price to pay, right?

And on that note, USA Today presented about Scott Boyle, a film critic who received a kidney and pancreas transplant ten years ago. For the last five years, he has been beseiged with...side effects? Other issues? Post-transplant illnesses? I'm not really sure how to categorize his ailments. My old cardiologist probably said it best when she told me, "You're trading in a disease that is killing you for a disease that you can manage." The title of this story also says it all: "Double Transplants for Type 1 Diabetes Brings Troubles, Gifts."

I found this story sad and fascinating, almost like a car accident you can't help but stare at as you drive by. Here's a snippet:

It has been 10 years since I opted to treat my diabetes with a kidney and pancreas transplant, a decision that, for the first time, I'm beginning to question....

[D]octors aren't sure how to keep my body from breaking down. They've diagnosed me with two post-transplant illnesses: cyclic vomiting syndrome (CVS) and atrial fibrillation. CVS is a powerful wave of nausea that hits without warning and can last hours, leaving me heaving long after my stomach is empty.

The nausea depletes me of electrolytes and minerals, which sends my body into the more dangerous complication: atrial fibrillation, a condition in which the heart pumps twice as fast as normal but circulates only 60% of the blood, raising the risk of a blood clot and stroke.

Today, I'm in the throes of both complications. I'm rushed to New Mexico University Hospital, where nurses are having trouble finding a vein. I've had so many blood draws over the decade that my veins have scarred and it's difficult to find one that's usable.

Scott Boyles, Double Transplant for Type 1 Diabetes Brings Troubles, Gifts, USA Today, Jan. 11, 2009.

My good childfriend friend had Type 1 diabetes. She lived two doors down from me. I remember when she found out she had diabetes, we were about thirteen. I don't think I've ever understood what diabetes does to your body. I think I've thought, oh, you watch what you eat, you'll be fine. I found out how wrong I was. She mentioned once she had faced a kidney transplant but thankfully, she didn't need it. Maybe she did. We lost her in 2006. She slipped into a diabetic coma, where she remained for a year, until her death. She left behind a fiancee, a son, her dear, wonderful parents and two brothers. It was a complete tragedy.

I hope there is a cure sometime soon. I hope others who have a transplant don't face these troubles. I hope it becomes easier to manage the illnesses we've traded up for. I hope Scott makes it. And me too....

Regenerative Medicine -- For Men!

2010-01-08T09:23:00.001-06:00

I flipped through the Austin Chronicle on New Year's Day and came across an article on regenerative medcine. Remember I wanted to research that? I haven't gotten around to it yet. LOL. Soon, soon. However, this article interested me. Of course, it was filed under "News of the Weird."

Wake Forest University's Institute for Regenerative Medicine, which has successfully grown human bladders in the lab using only a few extracted cells sprayed onto a chemical frame that mimics the body's tissues, has so far been unsuccessful at regenerating penises because on the organ's complexity. However, it announced in a November journal article a success with rabbit penises. Four of the 12 rabbits with lab grown phalluses successfully impregated females, and with an unexpected finding, the new penises did not appear to lessen sexual desire, in that all 12 rabbits began mating within one minute of meeting females.

Chuck Sheperd, News of the Weird, The Science of Sex, Austin Chron. Jan 1, 2010, at 49.
Okay, here's my take on this:

If you can make bladders, why do you immediately skip to regenerating penises? "Okay, bladders, check. What's next? Hm, hearts, kidneys...nah...lungs, livers, oh, wait, yes, PENISES. Perfect, let's go with that...." Is there some ovewhelming need for new penises? Is someone going to die because they don't have a penis? Even John Wayne Bobbit lived, and has a crazy new career in porn. Think about all the money that went into developing Viagra. I think this is the equivalent. Really, if men bled, tampons would be free.
A penis is "complex." Wow. Okay. How about a heart? Is that "complex?"
Do we really need to make more rabbits? I thought male rabbits would make bunnies at the drop of a hat. I didn't know they suffered from inhibited desire. All kidding aside, I'd like to encourage couples to consider adoption before they have a man-made penis put on so they can procreate. Just a suggestion, not for everyone.
And finally, CAN WE PLEASE TRY TO MAKE A NEW HEART IN TIME FOR THIS ONE TO FAIL?

Caught the Flu

2010-01-07T17:26:00.001-06:00

I have the flu. Alert the media! HTP with the flu! And yes, I got all the vaccines. It's not swine flu, it's just a stomach bug. I feel just terrible. It came on suddenly, and it lingers. Or maybe it's food poisoning. I don't know. I'm not going to die. An HTP can catch the flu, and live. Thankfully, my kids are just old enough to take moderately good care of themselves while Mom lies in bed, groaning and clutching her stomach.

Technically, if you vomit, you're supposed to call your Transplant Program and ask their advice. Note: I am not a good example to follow here. Do not follow my example. But I don't do that anymore. First, because I hate my Program and second, because they don't do anything except this:

"What?" (or the lovely variation, "Huh?")
"Well, I'm vomiting." I say weakly.
"And?..."
"The manual said to call if I vomited. So I'm calling...."
"Please hold."
I think the last thing I want to do with the Technicolor yawn coming on is wait on hold. Click.

So excuse me, I have to leave you now. More tomorrow.

Hello Kidney from Wrong Tees

2010-01-04T08:27:00.000-06:00

Happy 2010 everyone! The vacation was wonderful, my family and I visited the missions of San Antonio, saw the Schlitterbahn Hill Country Christmas (really expensive, but a nice night out), spent time with friends and set off legal fireworks on New Year's Eve (I really, really love living in Texas, in NY, fireworks are not allowed). I had a great time and I think my kids did too. Unfortunately, Buddy cut his hand open with a Cutco knife (anyone have those? As my cousin said, "I get cut just looking at those things.") It was 6 a.m. in the morning, he wanted fruit snacks, shazam! Three stitches and now antibiotics. Sheesh. At least he still has his finger. One millimeter over and he would have nerve damage. Darn kids and their darn fruit snacks. Darn cutco knives.

Recently I was paging thru an old journal and I realized there I was, thinking "I'm 34..." That was six years ago (and I'm 40 now). SIX years. Where did those six years go? So fast and yet...so exceedingly slow. Anyway, here's a laugh sent to me from SuziQ's husband (sorry, SR, I couldn't think of another nom de plume for you, so SuziQ it is!). It's from Wrongtees.com.

Phone Company Not Paying For Heart Transplant

2009-12-29T09:39:00.000-06:00

If you receive a text message which asks you to forward it so a baby girl can have a heart transplant, don't bother. The "phone company" is not paying $2 to her health care fund for every forwarded message. According to Snopes.com, this is a hoax, in the same vein as "forward this email and this child gets X dollars for their long-term health care."

Organ Safety "Has Not Been A Priority in Transplantation."

2009-12-28T19:37:00.000-06:00

Nine thousand people die each year while waiting for an organ. Those of us waiting for a heart, lung, or liver die first, those waiting for kidneys go on dialysis and eventually, they die too. When I was waiting for my heart, I just wanted to live. I knew I wasn't going to get HIV or hep from my donor because they run all those tests. That was all that mattered to me. But remember that British soldier who caught lung cancer from his donor? Would you take that chance? Yes, I would, or else I die.

Recently, an organ donor died after being treated for seizures. The doctors determined his cause of death to be an autoimmune disease that was non-tranferrable. Two people received this boy's kidneys. Unfortunately, they both contracted a rare disease.

Doctors did not realize it at the time, but [the donor] had a brain infection caused by a type of amoeba. The infection is rare, and exceedingly difficult to detect.

The mistaken first diagnosis was acute disseminated encephalomyelitis, an inflammation of the brain and spinal cord that is thought to be caused by the patient’s own immune system. That condition is not contagious, but the diagnosis is not really definitive; it is made when everything else has been ruled out.

Given that there was an element of uncertainty, doctors tested the boy for many more infections than organ donors are routinely screened for, Dr. Schlessinger said. All the tests were negative, so his heart, liver and kidneys were transplanted into four patients. Afterward, an autopsy still missed the infection and seemed to support the mistaken diagnosis.

Denise Grady, Officials Re-Examining Organ Transplant Rules, N.Y. Times, Dec 27, 2009.

Dr. Matthew J. Kuehnert, the director of the office of blood, organ and other tissue safety at the disease centers, said that transplant patients are sometimes an early warning system for new infectious diseases. He said the nation needed a “sentinel network” to collect information about donors and transplant patients and notify doctors when an organ or tissue recipient gets sick.

“That would both potentially help clinicians taking care of patients already transplanted,” Dr. Kuehnert said, “but also in the case of tissues, which sometimes take longer to be transplanted, because they can be stored, it would help clinicians before they transplanted them into a donor.”

[Chillingly,] [h]e added, “I think organ safety has not been a priority in transplantation.”

Id. (read the entire article here).

As terrible as this sounds for all of us who have to accept what they give us (or die), there is a bigger issue here: When will we have a surplus of organs where we can turn donors away? When will we have a supply where we can pick and choose the best possible organ? When will we get to the point where someone won't die for lack of the organ we wouldn't take?

Merry Christmas AGAIN

2009-12-25T08:39:00.000-06:00

The presents are all open, my children have passed the "oh my gosh, this is soo great" stage and are now onto the "This doesn't work and I'm crying over it" phase. I'm sitting here trying to wake myself up. I might just go back to bed. I wanted to share a story I saw on the Today show recently. It's about Kathy Clarke and her husband Rick, a couple who adopted nine children. Yes, you read correctly, NINE. Not eight, but NINE. Let me say that again for those in the cheap seats: NINE KIDS. Rick underwent a liver and pancreas transplant in order to get healthy enough to earn money for his family, but he didn't make it. The Today show adopted the family through its "Getting to the Heart of Christmas" program. It was very heartwarming. Let's include our transplant brother Rick in our prayers this season.

My friend Will D. received his new heart on December 23. I wanted to give a shout out to him and ask you all to pray for his recovery and wellbeing. Please include his donor's family in those prayers. Okay, enough praying, let's eat! Have a great Christmas.

Merry Christmas!

2009-12-24T11:50:00.000-06:00

I want to send out a hearty "Merry Christmas" to:

(1) Everyone who takes the time out of their busy day to read my blog. I appreciate it and hope you can be just little inspired by what I come up with every once in a while;

(2) Everyone out there who has been touched by organ donation -- whether as a living donor (that means you, ice cream lovers!), a donor family, or a recipient ;

(3) Everyone driving on our roads this holiday season. Please drive safely. And if you don't tell someone you're an organ donor right now;

(4) My family, as they continue to shove doughnuts and cookies into their mouths. Save some room for dinner, kay?

(5) Will D., who is on the waiting list for a heart up in Houston this holiday season. Be well my friend, may your wait be short and your life be long; and, last but not least,

(6) My donor family, whereever they are. Be comforted during this season. Know that you have given me the greatest gift of all. The gift of life.

Merry Christmas!

Christmas Driving

2009-12-21T17:37:00.001-06:00

Here's the scenario: I was driving on the highway in front of my house. The weather was misty and cold(er). This car in front of me suddenly spun out. It looked like a kid's car, not an SUV or a minivan or a Volvo. Just a regular peewee car with bad tires on a slick road. And it spun across the highway, TWICE. I thought it was going to hit me. I braced myself and braked, but the car managed to get to the shoulder and stop, facing in the opposite direction. I turned on my flashers, rolled down my passenger window and yelled, "HEY, YOU OKAY?" The guy in the car looked about 20, 21, and he was white as a sheet. I mean, damn, this kid looked scared. He nodded and I said, "Hey, take a few deep breaths before you get on the road, okay?" And he said, real shaky, "Yeah. Thanks."

Great story, right? Well, here's the punchline, as I was pulling back into traffic, some moron had the balls to honk at me. Do you BELIEVE that? I mean, way to curdle the milk of human kindness, dude. So I repaid the favor by rolling down my driver's side window and screaming, "GO BACK TO CALIFORNIA, JACKASS!"

That whole situation reminded me of a time I had just received a bad diagnosis and I drove to tell Teacher Man about it. I wasn't paying attention and my car ran out of gas right in front of the gas station. And there I was, standing in the middle of the road, unable to move my car, tears running down my face, and people are honking at me as if I want to be broken down in the middle of four lane highway and therefore ruining their effing day. So the end of that story was, some guy got out of his car, pushed my car out of the way while wearing a business suit, and then went to the gas station and brought back a styrofoam cup full of gas for me. I don't know his name, but I often think of him. Thanks, whereever you are.

Ice Cream for Your Tissue Donation!

2009-12-18T20:53:00.000-06:00

Amy's Ice Cream is offering Central Texas blood donors a free pint of ice cream during its annual holiday "Give a Pint, Get a Pint" celebration. What a great gift! (Both the blood AND the ice cream!)

Donate blood at any fixed site location or mobile blood drive between December 9 and January 4 and receive a FREE pint of ice cream from Amy's Ice Creams.

The Blood Center experiences a drop in blood donations during the holidays as people busy themselves with shopping and travel. But the necessity of a steady supply of blood never takes a holiday.
Returning this season, we’re sweetening the deal again with our Give a Pint, Get a Pint holiday drive. Each blood donor will be thanked with a FREE pint of ice cream from Amy’s Ice Creams. Donors will receive a coupon to redeem their pint at any of the Amy's Ice Creams locations in Austin. Coupons are valid through February 15.

http://www.bloodandtissue.org/newsandevents.php

I would encourage anyone eligible to donate blood to go donate during this holiday season. Please give, you never know when someone will need it. And I know this sounds pretty hokey, but for the blood donors who took the time out of their busy schedules during the summer of 2002, you would be staring at a blank computer screen right now.

Thanks to my friend SR for giving me the heads up on this on. I really need to think of a nome de plume for SR, she's a great friend AND she gives me so many good leads for this blog. Something starting in "S." I'll have to think of that one.

I Don't Have a Title For This One

2009-12-17T09:36:00.001-06:00

That Program party I went to yesterday was ... um...fine. I was supposed to bring something "healthy" and homemade, for the doctors.  As if they don't get paid, right? For all the money they get out of us, you'd think they'd be making us food, but hey, that's just my curmudgeonly opinion. LOL.

FYI: There are a lot of dietary restrictions to follow when you're an HTP. But that didn't stop people from bringing ye old string bean casseroles full of canned cream of mushroon soup (chock fulla sodium! But oh, so delicious...) and cherry gelatin fluff (ooh, diabetic coma, here I come...) Of course, I didn't follow orders either, having picked up my favorite at the local gourmet store: cherry pie. YUM. Love cherry pie. (Funny, but I just remembered my first love had that old song Poison "She's My Cherry Pie" on his answering machine. Huh. It was the late 80s after all. But I don't think that affected my love of pie...) That was the only thing I ate. Prompting all the grannies around me to scold me and demand I eat turkey and dressing. Hey, every HTP should know, life is short. Eat dessert first. Or only. LOL. It kind of reminded me of home, when all the grannies used to scold me about even considering a tattoo (that's going to happen, eventually...)

I wanted to talk about a conversation I had with one of Sissy's friends. This poor girl was in tears because she heard there was a "rumor" going around that she "was sick with ADHD." You know kids. Sigh. Ignorance starts early and runs deep.
   "So, do you have ADHD?" I asked.
    "Yeah," she said miserably.
    "That doesn't mean you're sick. It's something you get from your birth parents. It's like your eye color. Your eyes are blue. My eyes are green.  We get that from our parents too. You can't change it. It just is."
    I had her interest. I could see the wheels turning.
    "You know," I continued, "Having ADHD just means your different, and that's cool. I'm different too. I had a heart transplant and sometimes people start rumors that I'm sick," (You know who you are...), "But I try to turn it around, use it as an educational thing. Like sometimes I say, look at me, can you tell I had a transplant?  Do I look sick? Maybe we can try that with your ADHD. You can say 'hey, can you tell I have ADHD? I'm not sick. It's not an illness, it's just a different way of learning.' And if you're not ashamed of it, it won't hurt your feelings."
   She nodded and said she felt better.

So, relaying this conversation to Teacher Man for his sage advice prompted him to call me "amazing." I'm not really amazing, but I was a little proud I pulled this advice together on the fly. I don't know where that came from, sometimes I just pull stuff out of my...ear. Having a transplant is being different, yes, but many people struggle with their differences too.  I'd like to educate people about accepting all differences. If you put this in a patriotic context, that's what makes America great, the acceptance of differences in all aspects of life.

Christmas Present to Myself

2009-12-15T08:09:00.000-06:00

Hi! Here's a picture of a beautiful present to myself that I purchased off etsy.com. It's printed on a vintage dictionary page, right over the word "electrocardiogram." I love it. Sorry I couldn't get the flashback off the pic. I really love the stuff on etsy, especially this, and this, and ooh, ooh, THIS. Come on, you have to have a sense of humor over something like a transplant, right?

I wanted to write about the 60 Minutes piece on growing organs (regenerative medicine) today, but I have to go to a party The Program is throwing over at the hospital and I don't have time to research it. I don't suppose I have to go to the party, but I don't want to seem like a big grump. Even though I don't like them, I don't like their hospital and I don't want to cook for the doctors because you know, it's not like they do this for FREE. They're PAID, you know. Sigh, I am a curmudgeon. I can't help it. LOL. This isn't the program that inserted my new heart, because I LOVE them. LOL.

See you tomorrow! Enjoy your Christmas shopping and Happy Chanukah y'all!

Yeah, I'm Not Depressed (Today...)

2009-12-14T12:00:00.000-06:00

I want to thank everyone who commented on my post last Friday and those who contributed to the flood of emails I received from friends and family concerned about my mental wellbeing. I just wanted to clarify: I'm not depressed. I'm actually quite fine. That's not to say I haven't been depressed in the past, and I fully expect to be depressed in the future. However, I've developed many techniques of dealing with my depressive episodes. For example, I change my television viewing from crime dramas to comedies. I got this idea from a very wonderful cousin who, sensing I was headed for a Black Mood (our euphemism -- the Black Mood is quite common in my family), asked me what I was reading. "The Diaries of Sylvia Plath," I said blithely. "Are you crazy?" she screamed, "Put that shit down!" And I did. And I felt better. That, years of therapy, medication, prayer, yoga, healthy diet, B Complex vitamins, exercise, and SHAZAM! I'm cured! LOL. Not really, but I'm better. My post was more a PSA, for others to think about the people in their lives and to encourage people who need help to seek it. I've been there, I've sought help, and when I get there again, I'll seek even more help. But my post was not a smoke signal to send paramedics to my house. Please. I'm fine.

That being said, I still can't find the damn spell check button on this thing. Argh. But this new just in: holy semoley, they just did a thirteen way kidney swap. YOWSA!!

Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.

And strikingly, 10 of the 13 kidney recipients are black, Asian or Hispanic — important because minorities are far less likely than white Americans to get a kidney transplant from a living donor, the best kind.

"You are going to die a lot earlier sitting on that dialysis machine than if you get transplanted," says Melancon, whose goal is to pair domino kidney exchanges and the blood-cleansing treatment called plasmapheresis to narrow the troubling disparities.

Lauren Neergard, AP Medical, Yahoo News, Dec. 14, 2009.
Keep up the good work!

It's the Holidays and We're Depressed.

2009-12-11T08:28:00.000-06:00

Everyone --whether you've had a transplant or not -- is depressed during the holiday season. In fact, my sister and I used to joke that our father was depressed only two times of the year: Tax Time and Christmas Time. LOL. Family stresses, economic reasons, expectations that come crashing down around you. Depression runs quite deep in the transplantee community. Many AOPs gloss over this fact, preferring instead to say, "Well, you're alive, what do you have to complain about?" And that's true. Life is a beautiful gift, for everyone including transplantees, what do any of us have to complain about? That's a great answer if you believe that depression and mental illness are NOT inherited, biological illnesses. WHICH THEY ARE. If you're genes predispose you to depression, you're going to keep that genetic predisposition whether you have a new heart or not. The insertion of a new organ adds additional stressors, for example, survivor's guilt, the loss of a career, the loss of time, the crazy-assed amount of time you have to devote to taking care of yourself so you don't die, among other things (like how the meds affect your mental well-being. I mean for goodness sake, we take steroids on a regular basis).

Although organ transplantation offers improved quality of life for the majority of recipients, they must still cope with being on multiple medications, tolerate medication side effects, undergo frequent testing and medical follow-up, and be at risk for serious complications such as organ rejection. For some patients, this may prove to be disillusioning. On the other hand, psychiatric symptoms can develop secondary to immunosuppressive therapy with corticosteroids, cyclosporine, or tacrolimus, especially early posttransplantation, when dosing is highest. Psychiatric symptoms in transplant recipients require prompt treatment with psychotropic medications, education, supportive therapy, and possible reduction of immunosuppressive dosages.

Catherine C. Crone, MD, Suicide in Transplant Recipients, Medscape, Nov. 23, 2003.

Recently, I read an article from USA Today entitled "Loneliness is Contagious." I wanted to focus on that article until I gave it more philosophical thought. I mean, doesn't "lonely" mean you are "alone?" Doesn't it mean you isolate yourself? So if you're lonely, how does it spread? Shouldn't that title be "Depression (or negative attitudes) are contagious?" But, ah!, they wound up explaining it thusly:

"When you feel lonely, you have more negative interactions than non-lonely people," says Cacioppo, who directs the University of Chicago's Center for Cognitive and Social Neuroscience. "If you're in a more negative mood, you're more likely to interact with someone else in a more negative way, and that person is more likely to interact in a negative way."

Sharon Jayson, Like Happiness, Loneliness is Contagious , USA Today, Dec 1, 2009.

Feeling lonely doesn't mean you have no connections, Cacioppo says. It only means those connections aren't satisfying enough. Loneliness can start as a sense that the world is hostile, which then becomes a self-fulfilling prophecy.

"Loneliness causes people to be alert for social threats," Cacioppo says. "You engage in more self-protective behavior, which is paradoxically self-defeating." Lonely people can become standoffish and eventually withdraw from their social networks, leaving their former friends less well-connected and more likely to mistrust the world themselves.

Because loneliness is implicated in health problems from Alzheimer's to heart disease, Cacioppo says, reconnecting to those who have fallen off the network may be vital for public health.

Lisa Grossman, Is Loneliness Contagious?, Discovery News, Dec. 1, 2009.

What's my point here? If you are a transplantee or a friend or family member of a transplantee, keep a eye out for the signs of depression or "loneliness" (isolating behaviors) and GET HELP. That could be as simple as meeting with friends, going out for a cup of coffee with your spouse, inviting people over on up to getting medication and therapy or joining a support group. Even "eHow" advises in an article about how to care for someone who has had a liver transplant and includes this tidbit on caring for their mental health, "Listen to your loved one, who may feel depressed or frightened and may need to talk. Consider contacting your transplant coordinator for professional counseling." I know it might seem like YET ANOTHER thing we have to take care of (in addition to, say, flossing because the meds make our gums overgrow), but no one should go through a transplant and be miserable.

Just When You Think You've Seen Everything...

2009-12-09T07:53:00.000-06:00

Along comes Organ Donor Action Figures! WOW! I love them! And they would make a fine holiday gift for the heart transplantee in your life! You can't pick which transplant you want (which is kind of like real life, you take what they give you, right? And if I had to pick mine, I would have taken, say, a hair transplant instead of a heart. LOL). They cost $15 -- or $400 for the whole set (I'm not getting the whole set. My kids have to go to college someday, you know?) And if you buy 4, and put "Wired.com" in the paypal box, you get the fifth one free! Awesome! Thanks to my dear, dear friend SR for bringing this to my attention. I just about laughed my ass off.

Heart Transplant Fiction: On the NYT Bestseller List

2009-12-08T17:44:00.001-06:00

Remember when I was yammering on about the artificial heart and Paperbackswap? And how there was this genre of books called "heart transplant fiction?" Well, apparently, on the New York Times bestselling paperback list this week is Dean Koontz with Your Heart Belongs to Me. This is the summary from Amazon.com:

From the #1 New York Times bestselling master of suspense comes a riveting thriller that probes the deepest terrors of the human psyche—and the ineffable mystery of what truly makes us who we are. Here a brilliant young man finds himself fighting for his very existence in a battle that starts with the most frightening words of all…

At thirty-four, Internet entrepreneur Ryan Perry seemed to have the world in his pocket—until the first troubling symptoms appeared out of nowhere. Within days, he’s diagnosed with incurable cardiomyopathy and finds himself on the waiting list for a heart transplant; it’s his only hope, and it’s dwindling fast. Ryan is about to lose it all…his health, his girlfriend Samantha, and his life.

One year later, Ryan has never felt better. Business is good and he hopes to renew his relationship with Samantha. Then the unmarked gifts begin to appear—a box of Valentine candy hearts, a heart pendant. Most disturbing of all, a graphic heart surgery video and the chilling message: Your heart belongs to me.

In a heartbeat, the medical miracle that gave Ryan a second chance at life is about to become a curse worse than death. For Ryan is being stalked by a mysterious woman who feels entitled to everything he has. She’s the spitting image of the twenty-six-year-old donor of the heart beating steadily in Ryan’s own chest.

And she’s come to take it back.

I'm going to save my $9.99 plus tax, first, because I don't like Koontz's other books and second because I don't like "heart transplant fiction." I don't want to read about my donor coming back for her heart. Please. I feel guilt enough about it already, stop trying to give me nightmares, Koontz!
However, I thought I would include this essay from Kootz on the same Amazon page:

Amazon Exclusive Essay: Dean Koontz on Writing Your Heart Belongs to Me
I have been asked by the secret masters of Amazon how much research into transplant surgery I did before writing Your Heart Belongs to Me. I would like to reveal that, in the interest of accuracy and the accumulation of vivid detail, and because I bring total commitment to my writing, I underwent a heart transplant myself, even though I didn't need one. This would be a lie, however, and people without a sense of humor would write by the hundreds to accuse me of taking a perfectly good heart needed by some patient who really needed it.

To prepare for this novel, I read a few books on the subject of transplants, watched two educational films during which I passed out repeatedly at the sight of blood, and spoke with a few medical specialists in the field--largely to ascertain how they manage not to pass out in surgery every time they expose the pulsing internal organs of a patient.
...
Although it might seem to be a ghost story, Your Heart Belongs to Me is something else entirely. In addition to being a thriller with a medical procedure as a key element, it is an unusual love story. Those who have never read my books--we know who you are--might be surprised to learn that more often than not, a love story is part of the mix. In a romantic relationship, we're vulnerable; and when a character in a novel is vulnerable, we are more likely to worry about him or her and to relate more intimately to the story. Furthermore, people in love have something precious to lose, and in their sometimes desperate efforts to hold fast to that love, they reveal themselves more profoundly than they might otherwise. In the early years of my career--or what we here in Koontzland call "the long slog"--publishers resisted me when I wanted to mix genres. These days, my publisher encourages me to pursue fresh ways of telling stories. Consequently, Your Heart Belongs to Me is a suspense novel and love story with a thread of the supernatural weaving through it, set against a backdrop of medicine and medical mystery, concerning certain issues of ethics that are timeless--and others that are unique to our time. And I promise you that the medical detail is not so graphic that you will pass out.

Dammit. Where's my spellcheck button? My whole blog is going to shit here. ARGHH.

Thanks Barney Clark

2009-12-07T16:46:00.000-06:00

So I was trying to get this header in about Barney Clark and the first historic artificial heart, but it wound up posting on it's own (twice!) and I didn't even realize it. And then I went away for a week. How embarrassing! In any event, let me clarify my previous thought. Paperbackswap had a header on December 2 celebrating the 27th anniversary of the Jarvik 7 implantation on Dr. Clark (he was a dentist.) I thought this was interesting. I also found it interesting that there is a genre of books entitled "heart transplant literature." LOL. I think I'll pass, thanks.

I was 12 years old in 1982 and I vaguely remember what a big deal it was. I did some research online and would you believe that if you type "Barney Clark" into Wikipedia, it redirects you to "Artificial Heart?" I mean, the poor guy doesn't even have his own Wikipedia entry. The doctor has his own entry. Sheesh. I think that says a lot about the disposable nature of the actual patient in all these experiments.

It's important to realize that the artificial heart is not an artificial assist device. The LVAD and the BiVAD are bridges to transplantation and they are used quite frequently. The artificial heart, on the other hand, is a whole heart, made of plastic and other artificially made bits, that is inserted in place of a heart or, in some cases, on top of a severely damaged heart. It's for lack of a more medical term, self contained.

Dammit. I'm having a lot of trouble pasting my quotes in here today and it's just leaving me one step away from major pissed-offedness. ARGH! Okay. I'm going to step away from the keyboard now and work on something else. DOUBLE ARGH...