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Posts Tagged ‘Transplant innovations’

Score another achievement for kidney paired donation (or daisy chain transplants, or domino transplants, as they are sometimes called). Johns Hopkins in Baltimore joined Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City for a 12-patient, six-transplant cross-country kidney chain.

An anonymous altruistic living donor began the chain, and a paitent on the UNOS waiting list for a kidney was the last link. According to the Johns Hopkins news release, all six donors and all six recipients are recovering.

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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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Many of you, both living donors and transplant professionals alike, have shared with me your frustration, anger, and/or resignation that there isn’t enough research available about the physical and emotional impact of the living donation journey.  (For those of you just getting started, you may learn this soon enough.  We are a relatively new phenomenon in the world of medicine, especially living liver donors, and the frank truth is that there isn’t much empirical data to go on out there.)

That’s why I was delighted last week to find three — count ’em, three! — news items on studies that have been or are being done.  Check this out:

  • Dr. Hassan Ibrahim and his colleagues at the University of Minnesota have published a study on the long-term health effects of living kidney donation. Says the Star Tribune in its January 28 article, “Ibrahim and his co-authors tracked down nearly all of the 3,700 people who had donated kidneys at the university’s transplant center between 1963 and 2007. They found that the donors’ life spans, and their risk for high blood pressure, diabetes, and, most important, kidney disease were the same as or better than those of non-donors of similar age, race and gender.”

(Coincidentally, on nearly the same day as the article appeared in the Star Tribune, I saw this obituary come across the Associated Press for Juanita Smallwood Osborne, one of the world’s first living kidney donors, who donated a kidney to her son in the mid 1960s.  She died last week of complications from aspiration of pneumonia, at age 88, and her one kidney was functioning well to the end.

  • Two nurses at the Johns Hopkins School of Nursing (JHSON) are conducting a formal study into the emotional and physical impact of living kidney donation.  Here’s an excerpt from the news release:

Who becomes a living donor and why? What information do they need to guide their decision? Who should be involved in the decision? And how can nurses best help support the patients and family involved in the process? Those are exactly the kinds of questions JHUSON Associate Professors Marie Nolan, PhD, MPH, RN; and Laura Taylor, PhD, RN, have been asking and answering in their groundbreaking research focused on the physical and emotional impact of living donor decisions.

Nolan’s work… has explored the process of living kidney donation, from the initial decision through surgical recovery. Her findings will help guide living donor education and informed consent, providing nurses and other transplant professionals information to help donors negotiate the decision regarding donation and for those who do donate, the recovery process. Taylor’s findings – the first of their kind to be reported in the literature – give nurses insight into working with the family of a living kidney donor, including the stress that she found often is reported by family caregivers of living kidney donors during postoperative recovery. To help better educate and prepare potential living organ donors and their families, she developed and is pilot testing the Living Donor Information Network for Caregivers (LINC), a web-based information and support intervention.

  • I would be remiss if I didn’t give a node to the National Institute of Health’s A2ALL study, which is following several adult-to-adult living liver donors and recipients — over seven years — at 10 leading transplant centers across the nation (including Northwestern Memorial Hospital, where I gave my liver in 2006).  There are only roughly 3,000 of us out there who have served as live liver donors, and because of how rarely the procedure is performed, relatively speaking, a combined study like this one is the only way to collect the valuable data that is required.  It is probably taking an army to coordinate and plan the thing.   I participated and continue to, and in fact received my first packet of results in person last week when a bunch of NMH’s former and future living liver donors gathered for a wonderful night of conversation.  The A2ALL Web site doesn’t yet have the findings we received, but in a separate blog entry to come I’ll link you to them.

THANK YOU to all the people putting on these studies.  They are essential to our health and well-being, to the care practioners who take care of us, and to the emotional and physical state of potential future donors.

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I’m in a somewhat fragile state, wearing my heart on my sleeve and getting emotional when I see happy transplant stories in the news these days.  (My brother Joe, the recipient of my liver in 2006, has been hospitalized three times in the past six weeks, owing to an unrelenting stricture in his duct at the point of surgical connection from his transplant.  The docs have inserted a subcutaneous line to help him with drainage from his liver, a contraption he’ll likely have to wear for months while the stricture stretches back out to normal dilation. )

So it is with the most ebullient pleasure that I look to this wonderful story on the Kidney Foundation’s Web site, about Mohammad Islam’s gift of his kidney to young Evan Hubbard.  Mohammad gave his gift as part of a kidney donor chain.  His wife had received a kidney from a total stranger, so he agreed to give his to someone for whom he was a match — which became Evan.  Evan’s father Paul, not a match for his son, agreed to keep the pay-forward chain going, and in turn donated his organ to a stranger with whom he was a match, Leroy Baker.

I love the idea of these donation chains, not only because they put on display our very human desire to give back to the universe for the gifts we have been given, but also because they speak to our selflessness as humans.  I could end this post here.  Paul, Muhammed, and Evan’s story is simply beautiful and loaded with hope.

But I am awestruck and inspired by more than just the “pay it forward” angle in this story.  Based on his name, I presume that Mohammad is Muslim, which I mention only because of the following thought.  In almost three years of following living donors in the news, this is the first time I’ve ever seen a story about a living donor in the U.S. who is Muslim.  And, maybe it’s just my personal need for beauty amid my grief right now, or my post-election “high on hope,” but I am bouyed by this reminder that, no matter how many differences we have with the people around us — religion, race, gender, geographies, values, politics — we have so much in common as humans. 

In Africa, there is a marvelous concept of “ubuntu,” literally “me we,” which is bestowed to those people who become their fullest selves through their connections to other people — among people who are marked with kindness, selflessness, approachability, and compassion. 

Hindus and Buddhists use the word “namasté” to say, in one form of meaning, “I honor the place in you in which the entire Universe dwells, I honor the place in you which is of Love, of Integrity, of Wisdom and of Peace. When you are in that place in you, and I am in that place in me, we are One.”

I don’t know what term, if any, Islam might use to refer to this idea of human connectedness, our humanity as one people.  But I did find this nice page that describes from one Muslim professor’s point of view the presence of humanity at the center of prophecy, for Islam and all religions.

As we ponder the grief and suffering of our loved ones who suffer from organ disease, as we consider our own opportunities to be selfless as living donors, as we encounter differences in the people around us, may we all see above all the commonalities that bind us as humans.  To Paul, Mohammad, and all living donors who either gave to a loved one, payed it forward in a donation chain, or just altruistically chose to give to a stranger, I bow to the ubuntu in all of you. Your grace and humanity lifts my spirits and fills me with awe.

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The online transplant community is all a-twitter over the season premiere of ABC’s Grey’s Anatomy last week.  The intense premiere featured a 12-person kidney donation chain, where the would-be donors of several transplant candidates all swapped their kidneys with each other to find organs that matched for all their recipients.  That’s 12 transplants happening at once, in six operating rooms, all conducted by, you guessed it, those McDreamy, McSteamy, and McLovely starring physicians. (Doctors in the world of TV drama, you see, do every single task themselves, from labwork and MRIs in the dark to every known surgical technique known to man. Of course.)   The episode was rife with myth and medical-team decisions that pushed if not trampled on the boundaries of ethics and common sense.  I could go on for days about the factual inaccuracies and ethical breaches it contained.

Grey’s Anatomy isn’t alone.  My hands-down favorite drama these days, House, has had several transplant-related stories that are borderline, if not way over the top, offensive for their wreckless representation of myths and ethical boundary pushing.  Like this episode.  Or this one or this one.  ER has done it, Scrubs has done it, heck, for all I know, Dr. Quinn Medicine Woman has done it. 

But a part of me loves to see the idea of kidney swaps and chains featured in front of prime time America, even for all the flaws.  I imagine it does America’s couch potato public some good to be aware that swaps are a viable option in some cases.  If it sparks conversation with their loved ones and transplant teams, all the better.

What do you think?

While the Grey’s surgical team would have made a world record if they had actually conducted 12 transplants at once, in truth those kinds of swaps are increasingly helping people without a matching living donor get their life-saving transplant from a different living donor.  (I think the record is five surgeries at once, at UCLA, but I’m not sure.  Also, programs that conduct these chains are sometimes opting not to do all the surgeries at once, but instead over time and often involving multiple transplant centers.  Case in point

A long time ago, I remember hearing about a woman who was blogging about truth and myths in prime-time medical dramas.  As I recall, she was writing fairly regularly about the shows that had most recently aired, and then highlighting what was true, what was a stretch, and what was downright preposterous.  I tried searching for her again tonight but never found her.  If any of you are aware of any services that are doing this, please comment or email!

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There is promising news from OPTN/UNOS about the success of kidney transplantations from living donors who are over the age of 55.  A study of more than 20,000 kidney transplants has revealed that the survival rates of recipients who received living donor kidneys hardly varies at all when you compare whether the living donor was older than 55 or younger.  Meanwhile, the survival rates for the living donor recipients was significantly better than the rate for people who received kidneys from deceased donors — regardless of whether the living donors were over or under 55. 

There’s a lot of statistics in the report to plow through, but the bottom line is, transplant centers may be more receptive, based on this data, to the idea of accepting living donors from people over 55 than they have been in the past.  Which in turn means a larger pool of living donors, and, again in turn, means more hope for the people waiting for a kidney.

The OPTN/UNOS study was published in the American Journal of Kidney Diseases; I assume the September edition.  Since that’s not the sort of publication I frequent (I’m a Vanity Fair girl, myself), I got the news from Reuters Health, which posted an article on September 18.

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A basic Google search of the daily news will typically yield at least one story a day about living organ donation, often in small, community newspapers that still devote ample “ink” to telling stories about the humanity that surrounds them.   (The daily appearance of these stories isn’t surprising, given that there are roughly 17 living donor kidney transplants a day in the U.S., and another one or so living donor liver transplants a day. ) 

But I especially love when I find living donor stories ekeing their way into the the really big papers, the ones that more often devote their precious page space to stories to major topics of broad national interest, like economic collapses, wars, famine, hurricane damage, and the popularity of Sarah Palin’s eye glasses.  So hooray to the Wall Street Journal for this September 23 story on pay-it-forward, “daisy chain” kidney donations, such as one that just happened at UCLA Medical Center in Los Angeles.    I’ve written about this topic before… one potential donor, not a match for his or her loved one, goes ahead and donates anyway, to a stranger who does match.  This in turn inspires someone who loves that stranger to donate to another one, and on and on as people get the organs they need and get off of the waiting list. 

As I watch with interest a seeming decline in the number of living donation surgeries around the United States, and an ever-growing list of transplant candidates in need, this kind of story gives me hope.  This quote from the WSJ story suggests it gives hope to the medical community as well:

“This is one of the most exciting things I’ve been involved with in 30 years in this field.”  – Gabriel Danovitch, director of UCLA’s kidney and pancreas transplant program

Props to Troy, my good friend who works at the Wall Street Journal, for the heads up on this one!

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