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Posts Tagged ‘Living 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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We don’t like to be called “heroes.”  Let’s start there.  At a living liver donor support session hosted at Northwestern Memorial Hospital in Chicago a few weeks ago, that was the nearly unanimous opinion expressed by the 18 or so living donors in the room.  That opinion culled a strong reaction from one family member who was along for moral support, and from the living conor care coordinator Lori Clark and other support staff in the room.  “You all say you don’t want to be called heroes, but you are the very embodiment of the word,” said the family member, if not in those precise words then in something close to it.  “I’ve just never heard that before,” Lori said.  “It’s really helpful to know that!”

Here are some other nuggets that seemed to be consensus among the donors, if not unanimously shared:

  • We wish there were better support after the surgery.  We often feel abandoned by the system (a comment I noted was shared by both donors with easy recoveries and donors with more difficult recoveries alike).
  • Our gift has a major psychological impact on us.  For some, it manifests in chronic depression.  For others, in a long-lasting “high” and boost in self-esteem.  For some, there is a path that wanders between the two extremes.  But there is an impact, and it is profound.
  • We wish we knew our medical team better.  Having random doctors we’ve never met before pop in on us post-surgery is awkward.
  • Food is an issue.  We report post-surgical changes in metabolism, in taste for certain items, in appetite, even in allergies.  Causation may not be proven, but there seemed to be a lot of common stories in the group.
  • Ongoing pain and numbness is also an issue.  People reported not being able to sleep on their stomachs or sides, numbness of the scar, abdominal muscle pain after exercise — even those who were three years out. 
  • We need each other.  The experience is alienating and hard to discuss with people who don’t understand what we’ve been through.

There were some individual stories, not necessarily group consensus, that were fun to hear and share.  Tales of personality changes (“I suddenly like baseball”), of weird dreams, of memories from our nights in the ICU, of immediate post-recovery bloating and vomiting, of constipation, of our first big “walk” down the hall, of handsome doctors and annoying beeping machines. 

It was lovely.

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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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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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My vote for company of the month is Charley’s Grilled Subs, which in January is donating 10 cents from every sandwich sold to the National Kidney Foundation.  The nationwide Ohio-based chain is doing this in honor of Marcus Gilbert, a Charley’s franchisee who donated his kidney to one of his 16-year-old employees, Juan Delgado.  (You can read their story here.) Charley’s has more than 350 locations in 39 states and 12 countries.  Find one near you at their Web site, and contact the national franchise headquarters to say thanks here.

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Well, wow, this blog post from a living-donor recipient and his wife made my eyes get all teary through my smile:

http://writing4littleones.blogspot.com/2008/12/dear-john-letter.html

I am so profoundly grateful for blogs, which give our world this never-before-available window to the world and its beauty.  Thank you, Dixie and Paul, for sharing this!

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Jason Bleistein from my own neck of the woods here in the Twin Cities had a nice little Q&A-style write-up in the Minneapolis Star Tribune a few weeks ago.  The perfect little happy post for a snowy Saturday.  http://www.startribune.com/lifestyle/health/35231829.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUF

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