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Author Topic: First Person - Step by Step  (Read 1279 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: May 03, 2009, 11:02:03 PM »

First Person - Step by Step

Thanks to an innovative procedure, Peabody's Jen Searl, 29, went from lying in a hospital bed to competing in triathlons.

By Elizabeth Gehrman
May 3, 2009

When did you learn you needed a new kidney? I had a physical for summer camp when I was 12, and my mother thought I looked pale, so they did a blood test. Basically I had like 15 percent kidney function. The biopsy suggested a genetic disorder called Alport's syndrome.

So your father donated his kidney, but that didn't work for you? It was fine for the first year or so. But I had to take immunosuppressant medicines, and they had a lot of side effects. The big problem for me was one of the meds caused warts. The entire ball of my foot was one big mass of warts. It was disgusting, and it was so painful. I couldn't walk.

Was there any treatment for that? From high school until the end of college, I had 13 or 14 laser surgeries to burn them off, but they always came right back. I stopped doing anything sporty. I hobbled around a lot.

And then you found out you needed a second transplant. The doctors decreased the immunosuppressant drugs to try to lessen the warts, and my kidney went into chronic rejection. It was gradual, though, so I was able to schedule the second transplant for after college.

Why would the second transplant be any different? My mother had read an article about simultaneous bone marrow and kidney transplants done on patients with multiple myeloma, which can affect the kidneys, too. The bone marrow could trick a person's body into accepting the kidney without immunosuppressants. The article said they wanted to try it on kidney patients, so that lit a fire under my mother and me.

And you were the first non-myeloma patient in the world to have that surgery? Yes. My mother was the donor that time. I had to have chemo and radiation to kill my bone marrow before receiving hers. I couldn't really move during most of the two weeks I was in the hospital. My hair fell out, and I had to wear a mask everywhere for a couple of weeks after the surgery because I was so susceptible to infection.

How was your recovery? When I was in the hospital I could barely walk around the floor, it would take so much out of me. Then I just slowly started building up my endurance.

When was your first real workout? I started with exercise DVDs. I got conditioned pretty well and then branched out into running and spinning.

And now? Now I've done a few half marathons, two full marathons, and a triathlon. I won two gold and two silver medals at the US Transplant Games in 2006. In 2008 I won several events at the US Games and was also awarded Outstanding Female Athlete, which means I'll be going to Australia this year to represent the United States in the World Games.

You've come a long way.

I think I always had it in my head that running was the epitome of health. I was the girl who couldn't walk, and now I'm running marathons. I always joke that I did it just so I could tell the story. But really it's because it makes me feel so alive.

http://www.boston.com/bostonglobe/magazine/articles/2009/05/03/step_by_step/
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #1 on: May 04, 2009, 06:51:39 AM »

Run girl, run.   :cheer:
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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