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Posts Tagged ‘Organ transplants’

Jeffrey over at Transplant Alliance called the online community’s attention to a beautiful Web site called ellasliver.comElla Watson is a 25-year-old artist who somehow, remarkably, managed to survive biliary artesia as an infant and live relatively complication-free until she was 24.  She now needs a liver transplant, and her family and friends are considering being living donors.  Her art work is fun to check out — she has a photographic “medical militia” series with pieces titled things like “Shoot from the Gut” featuring waterguns and percutaneous bile drains – along with a perfect “mercedes” scar. 

I don’t know Ella and have never talked to her, but she is a member at Transplant Alliance, a great community to explore if you are experiencing transplantation in any way.

Thank you, Ella, for your energy, your humor, your spirit.  Let us know at GGF if there is anything we can do to support any living donors who might pop up to help. We’re here for them!

Here’s hoping your Web site can come down soon and you are on your way to a healthy new chapter.

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Transplant surgeons “tweeting” from the operating room during kidney surgery?  I LOVE technology!

(For those of you not hip to Millenial lingo, “tweeting” means posting brief updates to Twitter.)  Thanks, Meghan, for sending me the link!

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My good friend Mindy, who’s also a Greatest Gift Foundation board member, is vegan, so she was delighted to see in this one excellent blog post a woman’s personal account that ties a vegan, pro-animal rights lifestyle with her other favorite topic, living organ donation. 

I noted with interest that the author, living kidney donor Hillary Rettig, was advised not to eat too much protein going forward so as not to strain the remaining kidney. I had not heard that before — had any of you who have given a kidney?

By far my favorite paragraph in Hillary’s essay is the very last one, which I’m pinning up in my office as an ongoing source of a smile.

Sometimes, I find myself wondering what my kidney is up to at the moment. “I wonder if it’s walking by the pond.” “I wonder if it’s working at the vet clinic.” “I wonder if it’s watching bad TV.” I guess I’ve come to think of it as being like a dog I gave up for adoption. I don’t wonder if it’s happy, though, because I know that if any kidney is happy, mine is — having found its “Mr. Right,” an amazing being who shares its values and is committed to helping keep other amazing beings alive and happy.

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Tomorrow, David will join the ranks of living donors when a portion of his liver is transplanted into his Uncle, Paul, in Toronto, Ontario.  (Find his blog here.) Please join me in sending him best wishes for a safe surgery, a swift recovery, and the delightful outcome we all hope so badly for.

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After digesting the Wall Street Journal’s 2,500-word opus on the breaking scandal at the University of Pittsburgh Medical Center’s renown transplant center, my emotions are stirring violently this evening.  “Disappointed” is an understatement. “Shocked” is an overstatement. “Angry,” “betrayed,” “saddened,” “curious,” and “determined” all come to mind, but none alone fits.

More than anything, I feel protective.  I think about this amazing community that the Greatest Gift Foundation exists to serve, and I want them to be protected, not only from unethical behavior, but also from misinformation and false perceptions that will surely follow the resulting media blitz.  So this post is my effort to help move people toward enlightened, in-context conversation.

First, the scandal summarized in one paragraph:  Dr. Amadeo Marcos is accused of unethical practices to inflate the number of liver transplants performed at UPMC under his leadership, including questionable use of “expanded criteria” cadaver donor organs and living organ donor organs.  He is accused, per the WSJ article, of three primary abuses: 1) falsifying (or, at least, misrepresenting) the frequency of negative outcomes of his surgeries to make his program seem more successful than it was; 2) putting donors and transplant patients at unethical risk by performing transplants on patients whose low MELD scores suggested that the risks of the procedure would outweight the benefits; and 3) having romantic affairs with his co-workers.  A prominent motive, the article suggests, is financial.

Second, a plea for informed discussion — enveloped in context — from here: I hope every reader who encounters the WSJ article (and other related news items) will be alert and judicious — that they will carefully distinguish between proven facts and unproven assumptions, and that they will be wary of statements that could be lacking context. 

But I know they won’t (people don’t).  They will need our help.  Because living donation can be such a positive force in people’s lives, and because it is such a viable part of the solution to the awful organ shortage that causes so many people to suffer, we need to do our best to constantly increase our world’s understanding of living donor risks and benefits, truths and myths, ethical problems and very real successes.  In the wake of such high-profile news, we need to do this now more than ever.

Below are some of my personal thoughts, presented in the order they occur to me as I read the article sequentially.  Pass them on, debate them, add your thoughts to comments, whatever helps keep an informed conversation going with the people around you!  (And thanks, as always, humbly, for reading.)

Opinion 1: Transplant surgeons, governing bodies, administrators, and other key leaders should face the hard and ugly facts head-on.  If Marcos truly was acting unethically, and doing so for reasons beyond the best interest of donors and recipients, there should be severe consequences.  We should all insist upon strict adherence to ethics, quality governance to enforce ethics, and justice for any crimes or abuses.  This is the only way living donor and expanded-criteria transplantation can succeed as a part of our solution to the organ shortage.

Opinion 2:  The WSJ article offers no context to support the claim that Marcos or UPMC went overboard on the use of expanded criteria donors, which the article defines as “deceased people who had been older or sicker than preferred liver donors.”  So the public should take this accusation with a grain of salt.  Research is ongoing about the impact of donors who are older than 50 or who have had certain illnesses.  It is pointed out that the average age of Marcos’ deceased donors (47) was nine years above the national average in 2003.  But considering that UPMC is one of the most experienced and advanced transplant centers in the country, it might be reasonable for it to be pushing the envelope in the name of innovation.  So much goes into any worthy assessment of the ethics of the age of the donor; we should be cautious about forming an opinion just on the basis of this one article.

Opinion 3: Marcos’ former co-workers say some damning things, in direct quotes, in the article.  Be wary of the fact that they may have been taken out of context or misrepresented by the article’s author.  Case in point is this excerpt:

“At times, according to [Dr. Howard Doyle, now director of surgical critical care at Montefiore Medical Center in New York], patients healthy enough to walk into the hospital before being transplanted died ‘because they had a high-risk liver put into them.’

If we take that quote literally, it’s outrageously worthless.  The general public does not know the background of this enough for the assertion to hold any water with us.  Consider these questions:
* What criteria is Doyle using to define “healthy enough” — MELD score? Likelihood of dying within three days or three months?  Did the patient have a say in what “healthy enough” meant?
* Did those patients know what they were going into?  Did they have an opportunity to weigh the risks and benefits, and decide to try the transplant? If so, does that make the decision to go forward any less unethical?
* What criteria is Doyle using to define “high-risk liver” — the age of the donor alone?  The arbitrary choice of 40 years old, 50 years old, the national average… it’s all debatable as a standard (and being debated at the highest levels of leadership in the U.S.A.).  A healthy and fit 55-year-old donor with a six-for-six antigen match to the recipient could be, in some cases, a much lower risk than some 30-year-old donors with a three-for-six match. 

Opinion 4: Of all the horrible accusations in the article, this one angered and saddened me most:

[Dr. Thomas Starzl’s review of 121 living donor liver transplants] concluded that about 10% of the living donors had suffered serious complications, belying Dr. Marcos’s claim that this number was zero.

If Marcos truly concealed complications experienced by his living donors, I am furious — and we all should be.  Our system does far too little as it is to care for living donors who experience negative consequences (mental or physical).  Ignoring them or covering them up is an injustice of inconceivable proportion.  But let’s also be curious about what “serious complications” are, about how that 10% compares to known averages and likelihoods, and about how well those living donors were informed about the risks ahead of time.  Personal input: Had I known there was a 10% chance I would have serious complications, and were those serious complications clearly explained to me ahead of time, I want to believe I would have still gone ahead with my gift of my liver to my brother. 

Opinion 5: I could give two shits about the affair stuff.  Yes, I want to believe that the businesses I patronize — especially the specialists I rely on, like, oh, hospitals — are promoting ethical behavior that protects consumers from conflicts of interests and compromised quality of service.  I insist on it, in fact.  If Marcos broke hospital policy or was harassing women, he should be tried and disciplined.  But it should be a separate discussion from this bit about the ethics of his transplantation choices.   

Hm.  I have many more where these thoughts came from.  But this post is almost as long as the Journal article, and I don’t want to bore my poor blog readers. 

I’d sure like to hear what you all think of this story.  Comments???

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I’m rushed for time tonight but wanted to link to this important Wall Street Journal article as quickly as possible — the content will be available to non-subscribers only for a limited time, so act quickly if you want to reach it. 

This high-profile story discusses questionable ethics of leadership at the University of Pittsburgh Medical Center’s transplant program — specifically focusing on claims that Dr. Amadeo Marcos was irresponsible with methods like using organs from older donors and — yes — living donors.  I will post more commentary on the article tomorrow but for now am just getting the link up.

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A zinger arrived in my inbox yesterday, courtesy of “Kidney Transplant Today,” the email newsletter of the American Association of Kidney PatientsClinical Transplantation has published an empirical study that calls into question the social and economic ethics of Web sites like MatchingDonors.com that attempt to match altruistic would-be living kidney donors with people in need of a transplant. 

The study, or at least the press release about the study, does not introduce to the debate any new arguments, but its authors do take a firm stance that these sites are cause for ethical concern, based on their study data.  Unfortunately, not enough is covered about the study’s methodology or empirical data and results for readers like me to be able to make an informed opinion on the merits of the study.  But the news release in and of itself is a good read if you want to understand some of the concerns that many in the transplant community have about this approach to getting transplant recipients the organs they need.

I count myself among the critics, despite two things — first, my immense appreciation for everything that is being done with good intentions to try to help get people off of the transplant waiting list; and second, my friendship with a very kind man who donated a kidney through MatchingDonors.org.  I cannot get past the social injustice argument, which, data or no data, is explained rather well in the news release.  All over this country, leaders, physicians, patients, donors, and others are working to define policies and approaches that support the most good for the most people, based on the principle that race, economic status, physical appearance, and other variables should not be factors in how available organs get distributed to the people who need transplants. 

I’ll try to get my hands on more detail about the study so I can be better informed, and if I can, I’ll add a link to it here.

UPDATE (11/6/08)  My aforementioned friend who donated via MatchingDonors.com, Tom Simon, has posted his point of view on his blog, KidneyChronicles.com.  I strongly recommend it if you want to understand the opposing view of the authors of the study.  I don’t doubt he gets tired of defending his choice, and he makes a strong point.  He also gets extra points for calling me “beautiful” in his post. 🙂

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