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Archive for the ‘Organ transplants’ Category

U.S. Senator John Rockefeller (D-WV) and Representative Joe Courtney (D- CT) have introduced legislation to prohibit pre-existing condition exclusions in group health plans and in health insurance coverage for groups and individuals.  For living organ donors, this is important news, because health insurance plans can and do consider living donation to be an “pre-existing condition” that may impact a donor’s ability to secure health insurance and the cost of premiums.

Called the Pre-Existing Condition Patient Protection Act of 2009, the legislation is being supported by a who’s who list of organ-transplant-related non-profits:  The National Kidney Foundation, The American Society of Transplant Surgeons, NATCO – the Organization for Transplant Professionals, and the United Network for Organ Sharing (UNOS). 

To get informed, check out govtrack.us, where you can read the full text of the bill, track its movement through the House and Senate and read the floor speeches made about it.  Here are the links directly to the House and Senate versions:

If you wish to write your Congressional representatives, you can look them up at www.senate.gov and writerep.house.gov/writerep/welcome.shtml, both of which offer convenient email forms as well as mail and fax information.

For those who want to support the legislation, Transplant Alliance offers this sample letter:

(Date)
The Honorable (add Senator’s full name)
U.S. Senate
Washington, DC

Re: Preexisting Condition Patient Protection Act of 2009

Dear Senator (add Senator’s name)

(I or your organization) request that you support the Act introduced by
Congressman Joe Courtney, and Senator John Rockefeller titled
“Preexisting Condition Patient Protection Act of 2009”. This Act will
prohibit preexisting condition exclusions in group health plans and
health insurance coverage in the group and individual markets, including
live organ donation. It will remove barriers to live organ donation by
eliminating the fear of losing access to affordable private health care
insurance when becoming a live organ donor.

There are currently over 109,000 people on the nation’s waiting lists
for donor organs and over 6,000 Americans die each year waiting for a
donated organ. We must to do what we can to increase live organ
donation. Pre-existing condition exclusions dramatically increase the
cost of health insurance for these altruistic live donors, or have the
impact of rendering the person uninsurable altogether. The fear of
losing access to affordable health care insurance can be a major barrier
to potential live organ donors when contemplating this gift of life.

Live organ donors are a very low health care risk. It is time that the
federal government prohibits private health insurers and self-insured
health plans from treating live organ donors as having a pre-existing
condition. Removing live organ donation as a pre-existing condition is
a necessary component of health care reform.

(you or your organizations name here) appreciate(s) your consideration
of this request to support this Act that will prohibit live organ
donation from being considered a preexisting conditions. Thank you.

Sincerely,
Name
Title
Organization
Address

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This terrific and thoughtful blog post is WAAAAY over my non-math-oriented head, but I enjoyed reading it … so I’m sure any of you who are more mathematically inclined will enjoy it even more.

The blogger writes about a married couple — mathemetician Sommer Gentry and Johns Hopkins transplant surgeon Dorry Segey — who were principal researchers in a paper about how a mathematic algorithm might be applied to pairing thousands of potential donors with thousands of potential kidney recipients in a giant, graceful swap.  The paper they wrote suggests that such a mathematical solution could be a major part of the solution to the organ shortage for kidney recipients, provided it is paired with the appropriate controls to protect social justice and other sociological issues.  (At least, I think that’s what it said! :))

Wow.  This idea might be worth cracking out my old algebra book to understand better!

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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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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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