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Archive for February, 2009

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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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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A couple of weeks ago, the living donor care staff at Northwestern Memorial Hospital hosted a support group meeting for the living liver donors who have graced their lives over the past three years.  More than a dozen of us showed up, some with stories spanning more than three years, one who was still wearing her hospital ID bracelet from her donation surgery less than one week before, and one brave, brave soul who was due to become a living donor the following week.

At first, I admit, I attended more out of interest in how to provide this kind of support to other living donors.  I intended to take notes on the types of issues and needs that the donors brought to the conversation. On the format, what worked, what didn’t.  On the pace of conversation, the role of the transplant center staff, etc. 

But within minutes, I put my pen down and realized I should be present in that room as the living donor I am, as a participant and not a spectator, as someone who, for all the positive aspects of my donation story, still needs that precious and all-too-rare support from people who can understand what I’ve been through.  There were surprisingly few tears (although, a bit of me suspects we would see more if we got to know each other as a group over time) and a lot of laughter.  I left the meeting on a high, and on edge, unsettled and in need of more conversation.  It was like a hole had been shot out of the wall of a dam, and to this day, I don’t feel yet that it has been plugged.

There are two wonderful networking sites that are aiming to provide an online version of support groups, for the entire transplant community.  Transplant Alliance is one; Transplant Cafe is the other.  But I left Chicago that week with a sense that nothing can beat in-person gatherings like this one.  To all of you who were there, I hope our conversations continue.  And Mara, I owe you a phone call! Promise to make it as soon as I’m home from Paris!)

Tomorrow’s blog post: A list of some of the common experiences as opinions we landed on quickly as a group.

Wednesday’s post: A recommendation for centers who are considering launching support groups.

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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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I’m meditating today on two women I know who are having difficult times, one because her Mom is struggling with severe kidney problems in the wake of a liver transplant two weeks ago, and the other because, while she heals from her donation of her liver to her husband, he lies in the hospital, urgently awaiting another liver.  Sometimes, not even our greatest gift of love and self can be enough.  Or, maybe put another way, it has to be enough.

It’s Friday, and I want to share something beautiful with these two women and with the world.  Cheesy, perhaps, but I think Matt Harding’s Dancing 2008 video is the single most beautiful stream of bits and bytes ever to stream over the Web.  (That link is to the high-def version, which is so worth it if you have the ability to view it that way! If not the link to the lower-def version is on the page.) 

Happy Friday, and best wishes.

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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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If you care to follow the debate on whether living organ donors should be compensated as a part of the solution to the organ shortage, you are bound to find a steady supply of fodder.  It is everywhere lately, it seems —in ill-researched blog posts, in contentious radio shows hosted by blow-hards, in newspaper op-ed columns and hastily written letters to the editor, on righteous “about us” pages of new pro-compensation non-profits, and in high-brow magazines like the Economist (where writers tend to act responsibly).

Sally Satel, a resident scholar at the American Enterprise Institute (a conservative-leaning think tank in Washington, D.C.) has joined the fray with this January 30  article for The American, arguing in favor of donor compensation. Warning: wear your thinking cap when you read.  Satel uses classic logical structure and 25-cent vocabulary words to make her point.  It’s tougher than your average blog entry to follow, and refreshingly worth it. 

Yours, Altrustically…

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