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Posts Tagged ‘Donor stories’

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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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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People Magazine is reporting that singer Natalie Cole, who is on dialysis for Hepatitis C, may have found a kidney donor in her son, Robert. Here’s a link to the article.

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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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Not sure which I think is cooler:  That living kidney donor Tammy Steele and her kidney recipient, friend Carolyne Bryant, both kept diaries to document their experiences and were willing to open those diaries up to the public; or that the Tacoma News Tribune was willing to excerpt those diaries in the pages of their newspaper late last month. 

Either way, donors and recipients alike can benefit from hearing part of their story, if only in building our confidence in knowing that we are not alone as we encounter the fears, frustrations, and emotions of this journey.  I’m a little late in posting about it, because the story ran in the May 28 edition, but it’s still available online in the paper’s archives.

As a writer myself, I can’t imagine having gone through my living donation without dumping my thoughts down on paper (or on my old blog).  The value then was highly therapeutic.  The value now, even more immense.  I have a record to look back on that reminds me of my thoughts and feelings, that brings me back emotionally to the highs and keeps the lows feeling real.   It’s worth it!  Not sure where to start? If I remember correctly from when I was eight, the words “Dear Diary…” often do the trick!

 

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It’s a little hard to take a blogger seriously when he’s staring at you from every post with sticks of celery coming out his nose.  And yet, Michael Podolny has some great entries on his recent living kidney donation that most definitely deserve to be taken seriously! As far as I can see, he started sharing his personal journey with living donation on his blog, “De-Intimidator,” back on April 26 with this post, written 18 days before he gave his kidney to his sister.  Today, the transplant-related entries are subsiding as he heals, and his focus is returning to his original topics — food, travel, family — with a few posts ongoing about how he feels post transplant. 

Between then, there are some absolute gems about his feelings and experience.  My favorite post is undoubtedly this one, a beautiful stream of post-transplant thoughts in which he compares his kidney donation to the Buddhist experience of Tapasya, a purification of the self through a sort of spiritual fire.  He writes,

“Now it became clear what the meaning of this experience was. I had been given the opportunity to, of my own free will, make a sacrifice, a sacrifice of myself. And by making that sacrifice and because of my previous spiritual efforts, I was rewarded with the gift of Tapasya and had been able to remove the things that had been eating at me for decades. And on top of all this, this wave of Tapasya seems to have cleansed and healed the issues among my siblings and parent that have extended for decades as well.”

My sincere appreciation goes to Michael for sharing his experience and thoughts on the Web for the rest of us to enjoy and learn from.  I’ll be adding a link to his blog in the left-hand column this weekend.

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One of the most promising new online resourcses I’ve seen for the transplant community is the Transplant Cafe, launched by the endlessly energetic and charming Nelson Freytes, who received a liver transplant in 1998.  Built on Ning.com, it’s like a self-contained version of Facebook — you can sign up for free and have your own page, you can link to “friends” who are also signed up, and you can leave messages (private or posted for public view) for people.  Nelson does a great job of giving everyone personal welcomes and drawing his cafe community’s attention to specific people who especially need thoughts and prayers or special recognition at any given time.  This is a welcome example of social networking being used well to connect people who need each other’s friendship and support.  Today there are 304 members, many of whom are prospective or past living donors, and it’s growing quickly.

I’ve got a page of my own, and I set up a group called “living organ donors” that anyone can join.  You can also chat with other members about the upcoming Transplant Games in Pittsburgh (look out world, my brother’s going to dominate in single’s table tennis!) and join or create groups on several other topics. 

Among the people you’ll find there, you’ll see a page for an optimistic and heroic guy named Ryan Egnaczyk, a 24-year-old Philadelphian who donated part of his liver for his young cousin, Michelle, who tragically did not make it for more than a few days past the surgery.   You’ll find Tom Simon, a vocal and kind FBI special agent who made headlines when he donated his kidney to a stranger he found via the controversial Matchingdonors.com — you can also find him on the public speaking circuit and at his personal blog, http://www.kidneychronicles.com.   You’ll find Becca Ketter, a mom who donated part of her liver to her then 17-month-old baby girl.  And that’s less than 1% of the stories you’ll find there.  

Hope to see you at the Cafe! 

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