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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on May 24, 2009, 11:54:31 AM
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Facebook, Web, used to find kidneys for Md. woman
By SHANTEE WOODARDS, The Associated Press
2009-05-24 05:30:53.0
Current rank: # 1,052 of 2,544
Edgewater, Md. -
Jenny Cisneros' kidneys failed her twice.
The first time was when she was 18, and doctors feared she was anorexic. But further testing proved Cisneros had Good Pastures Syndrome, a disease that affects the kidneys and the lungs.
Her mother donated a kidney, but after a few years that kidney failed, putting her back on dialysis.
Now the 24-year-old Edgewater woman's friends are taking matters into their own hands and hoping they can solve her medical woes.
Michelle Collett has set up a Web site to help find potential donors and received approval from Clear Channel to set up billboards in the area, promoting the cause. Similar local efforts are ongoing on Facebook and through e-mail messages.
"You hear people complain about going to work all the time," Collett said. Jenny "would love to go to work, but she can't."
This is the second round of online solicitations from Cisneros' friends. Collett launched a similar effort last year and a donor was found. However, that person became sick and the transplant was ruled out.
So Cisneros spends her time going to her four-hour dialysis appointments three times a week. She gets exhausted easily and can't do the things she used to do, like martial arts.
"Going to the mall and shopping is like pulling teeth for me," said Cisneros. "For me, by the time I get from the mall entrance to Macy's, it really takes its toll on me."
The problems all started for Cisneros when she started feeling ill in the fall of 2003. She said she thought it was the flu, since she typically gets sick around that time of the year. But she went to the doctor's office where a full round of tests were ordered. The physician determined she was anemic and ordered a blood transfusion.
Eventually, she was diagnosed with Good Pastures Syndrome, a rare illness that causes fatigue and nausea, before kidney problems begin, according to the National Institutes of Health. Doctors told her the disease would run its course through her body and not return.
Her treatment included chemotherapy and steroids, but she had to be disease-free for at least six months before she could undergo a kidney transplant. Her chemotherapy came with several side effects, including seizures, she said.
Cisneros' mother was identified as a donor and she had her first transplant in 2004. After being released from the hospital, Cisneros enrolled in school and started working again. She said that's when she met her boyfriend, who took her skydiving, parasailing and on trips to Florida and the Caribbean.
"I did things I thought I never would do," Cisneros said, adding that things took a turn for the worse in the spring of 2006. "(That year) was worse for me than 03-04. I didn't know what was going on then, I was on so many drugs, steroids and painkillers. I was totally out of it. This time, I was with it, I knew what was going on. I'd say, 'I'm going to be sick tomorrow,' and I'd be sick."
Cisneros was placed back on dialysis that year and her doctors at Johns Hopkins Hospital agreed it was time to have her donated kidney removed. She also had other problems, like hypertension that caused her to develop congestive heart failure. She said she also had problems with ovarian cysts and decided to get a hysterectomy.
Doctors have identified Cisneros' case as dire. She is fully dependent on dialysis treatment and a new kidney needs to come from a live donor. There is a four in 1,000 chance that she will find a match.
Collett's deal with Clear Channel will allow her to place three billboards advertising Cisneros' health problems. One was be set up at Route 214 in Annapolis and two others for Frederick Road in Baltimore County and Falls Road in Mt. Washington.
The goal of the Web site is to increase Cisneros' chances of getting a kidney by adding to the National Registry database. Potential donors can get a blood test, followed by a urine test. If both are matches, then they move onto a CT scan.
The years of antibiotics and being in and out of the hospital have worn on Cisneros. But she said now she has a higher threshold for aches and pains.
"The rest of us would be curling up in a ball crying, but Jenny would be like 'get up,'" said Pam Gottschalk, Cisneros' friend. "She's pretty tough."
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http://www.examiner.com/a-2032169~Facebook__Web__used_to_find_kidneys_for_Md__woman.html