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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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Since the point of this blog is to share information and experiences about living donation, from time to time I’ll reprise some of my favorite posts from Chopped Liver, the blog I wrote while I was going through the experience of being a living liver donor in late 2005/early 2006.  This particular entry, written about four months after our transplant surgery, seems particularly timely because I have talked to a few potential organ donors this week and last who are going in for their MRIs and CAT scans as part of their work-up process.  I hope it helps them and any others who are going through work-up procedures.  Warning: the entry includes graphic photos of yours truly’s insides.  You can click here to read the original blog’s full archives from this particular anxious period in my journey.

Chopped and Unchopped: The naked before and after liver pictures

As promised, faithful Chopped Liver readers, below are the most naked pictures of me that you’ll ever find on the Internet: before and after MRI images! (Warning — they’re graphic — look away if you’re squeamish.) The before shots were taken on November 10, 2005, nine weeks before surgery. The after shots were taken on April 27, 2006, 14 weeks after surgery.

I haven’t been over these pictures with my doctor yet, but based on the amount of tissue I see with my untrained eye, it seems to me the volume is back to normal. The shape and position, meanwhile, are, well, off. The doc says that’s typical: “For the first few weeks it just dumps tissue as fast as it can,” he explained. “Then over the next three to twelve months, it re-shapes itself and moves back to where it belongs.”

What he didn’t know, of course, is that “where it belongs” is right here, on the Web. And in that case, here it is, ahead of schedule. Enjoy!

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My bags are packed for a rather whirlwind ten days. I begin in New York City for the weekend…

  • State of New York:
    • 276 living donor transplants conducted so far in 2008
    • 182 deceased donor transplants
    • 9,268 people waiting on the transplant list 

     

    …then go on to Montreal, Quebec, for the week…

  • Province of Quebec:
    • 46 living donor transplants conducted in 2007
    • 403 deceased donor transplants in 2007
    • 1,106 people waiting on the transplant list 

     

    …and then wrap up the following weekend with some of my dearest friends in Iowa.

  • State of Iowa:
    • 21 living donor transplants conducted so far in 2008
    • 29 deceased donor transplants
    • 489 people waiting on the transplant list 

Everywhere we travel on this planet, there are people waiting for the gift of life and brave, generous, compassionate people considering giving that gift.  If I had my way, I’d meet everyone of them every where I travelled.  As it is, I’ve been lucky to meet a few of them, and to learn quite a bit about the local transplantation scene along the way.   This particular set of travel won’t include any stops at transplant centers, unfortunately, due to my “day job.”  But as with every time I travel, I stop to do a little research about the situation there to round out my knowledge. It’s all going into a database that I hope becomes useful to the transplant community and my readers over time.

If you’re one of my fellow transplant community friends and you see me traipsing about in your town, give a wave! Better yet, send me your insights – I love to learn, the better to share.

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Let’s hear it for my hometown!  Two great items to share with our living donor community and its extended members of transplant recipients, families and friends, and health care professionals.  Both nuggest come from my original stomping grounds here on the planet: Des Moines, Iowa.

First, today in the Des Moines Register there’s a terrific article by columnist Marc Hansen about Team Iowa at the U.S. 2008 Transplant Games, focusing particularly on Jim Steinberg, who received a kidney in 2004 from his former college roommate.  It reports on some of the touching moments JIm witnessed at the games, including seeing the parents of a lovely deceased donor teenager meet with the recipient of their child’s heart, and ask to hear the heart beating in the recipient’s chest.

I was so proud of Team Iowa at the games.  Their group was huge. They wore smart green track suits and they graced the games with that signature Iowa openness and kindness I love so much.  They wore extremely goofy tall corn hats.  I almost wanted to suit up in green and join them, a proud homecoming of sorts. But I stayed true to my Team Northwest colors in honor of Joe, who lives in Portland now.

Second, I have been watching eagerly (and with a small competitive fire under my tush) the activities of the My Angel Foundation, a relatively new nonprofit (like mine) sparked by a transplant between two family members (like Joe and me) from Iowa (like Joe and me, woo hoo!) that has made some amazing strides in getting established and actively making a difference.  (Okay, comparison ends there — we’re still getting things ramped up at Greatest Gift.)   If you enjoy inspiration, and you care about transplantation issues, you should most definitely check out what they’re up to, which is predominately focused on spreading the word on organ and tissue donation. 

Especially note the fondation’s blog called Revive Hope, written by founder Ted Cochran and two of his knowledgeable friends.  How can you not love this mission statement:

Revive Hope’s focus is to revive hope by creating inspiration. This blog will have postings of inspiring stories about individuals directly affected by organ and tissue donation, provide information about organ and tissue donation, and inspire those who view the site to give hope through compassion!
Got an in spiring story to share? Here’s a great place to do it!

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