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Archive for October, 2008

In addition to this October 27 newspaper column being a fun read about a married couple who now share the bond of a successful living donor kidney transplant, it contained a fact that struck me as very interesting:

Spouses make up about 15 percent of living donors for kidney transplants at Legacy Good Samaritan, according to the hospital’s donor coordinator. And it’s more often the wife giving to the husband.

I wondered how that statistic holds true nationally, and how the rest of the living donor group breaks out by relationship to the recipient — parents, siblings, offspring, aunts and uncles and cousins, friends, and unrelated strangers.  And, whaddaya know?!?!  UNOS offers that statistic.

In 2008, of the 3,629 living donor transplants reported to date, the largest group of donors were biologically related siblings — 839 of them.  Parents made up about 9 percent, and biological children made up about 16 percent.  Spouses were just over 10 percent.

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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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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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It’s always nice to see journalists going deep on stories like this one, from Gannett Wisconsin Media, about the transplant surgery of retired firefighter Jon Sustachek: http://www.htrnews.com/article/20081019/MAN0101/810190371/1984/MAN04

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If all we ever went by were episodes of CSI Miami and Law & Order, our world’s definition of death would be an easy one, for sure.  (The person was alive. They were killed.  Now they’re dead.)  But reality is more complex than that, and in truth, physicians, ethicists, politicians, religious leaders, and many others are engaged in an ongoing debate about when human beings actually die.  Is it when our hearts stop beating?  Or when our brains cease activity, even though blood still may be pumping? As organ donors, transplant candidates, and loved ones of both, this debate impacts us because the definition of death has implications on the availability of cadaver donor organs.   It’s a healthy discussion, in my opinion.  One of my favorite publications for putting things into objective perspective is The Economist, and it has a good article on the death debate in its October 2 edition. 

On an entirely separate note, the drama from Joe’s hospitalization isn’t over, but we thankfully received some solid answers from a member of OHSU transplant team — and the prognosis looks promising.  He hopes to be home by Saturday.  Your comments from that last post made my day.  I’m ever grateful for your kindness, thoughts, and support.

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Hi, readers.  Last night I cried myself to sleep.  There you go – naked honesty.  For reasons that confound me, infuriate me, depress me, and leave me raw, Joe is back in the hospital this week suffering from complications due to strictures and infections that won’t seem to leave him to live his life in peace.  The doctors caring for him are unable to form a concensus on the root cause or appropriate course of action.  As a doctor himself, Joe has a remarkedly mature and informed, active role in his care, but he’s no more able to arrive at an authoritative answer than they are. And he, above all, is an expert in the crap he’s going through.

I’d just as soon not post about this here.  I want to be a rock, for all you potential and past living donors who might need our community’s support.  I want to avoid worrying my mom and dad, who read this blog.  Joe reads this blog, too — and I absolutely don’t want him to see me in sadness.  And when I sit down to write entries for this blog, I intend not to come across as a fragile human being and past donor, but as the objective, helpful representative of a nonprofit business that exists to help people.  A check-your-baggage-at-the-door kind of approach.  But a dear, close friend, who graciously listened to me vent through my tears last night, told me that this painful experience is part of what he thinks belongs on the GGF blog, that my experience as a fragile human being will be as helpful in bringing together living donors as my more clinical, informative entries will. If not more so.

So here it is, raw emotion from your friendly otherwise objective nonprofit founder.  Living donors, it’s right about now that I could use your support.  I’m sad that Joe isn’t better.  I hate answering the well-intentioned question (which I get so often) of “how’s your brother doing?” with the honest reply that, “well, right now, it sucks for him.”  I don’t have any regrets about my own gift, or doubts about the value of it, or lack of appreciation for how marvelous our success story has been so far.  But I could sure use a hug or a supportive email from any of you who’ve been there, or can empathize. Know what I mean?

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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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