So Hot Here

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

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

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

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

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!!!

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

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.