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Posts Tagged ‘2. Living organ donor blogs’

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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Send your good vibes toward David, who is getting worked up to donate his liver to his uncle, Paul, who suffers from the same disease my brother did, Primary Sclerosing Cholangitis.  David has started a blog to share his experiences — I’ve added a link to it to the “Living Donor Blogs” list on the right side of the page.  GOOD LUCK DAVID!  Keep sending your questions as they arise if we can help.

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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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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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It is a small world, indeed.  An inspiring woman, mom, and blogger right in my Minneapolis back yard is donating a kidney to her father in a couple of weeks, and she found the Greatest Gift Foundation’s blog through a blogger friend of a blogger friend who lives in England.  I love the Web!

Meet Terri: When she was a kid, her dad, a diabetic, would encourage her to watch him inject his insulin and say “someday, you might have to inject the insulin for me. You should know how to do it.”  And now, as a grown up, her opportunity to help him has become much more profound, more real, and more immediate.  Her blog, at http://territerri.wordpress.com (nice sense of design templates she has!) has some generous posts about her thoughts, feelings, fears, and appreciation for the support she has found, especially online. 

The post that really starts the story is here

I also liked this one, and not just because it mentions me!

Drop by her site and tell her hi and good luck!

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Some living donors become bloggers, like me, and some bloggers become living donors, like Conspicuous Chick, a great writer, rocker girl, and soon to be living kidney donor who’s blogging at http://sirencristy.blogspot.com/.  She’s been talking to the world there since 2002, but now she’s interspersing fun variety content with great posts about her life pre-transplant.  This entry in particular has me cracking up.

I’m adding a link to the living donor blogs list at right.  Stop by and tell her good luck and hi.

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