Woman reaches beyond family for willing donor to stave off kidney dialysis

Woman reaches beyond family for willing donor to stave off kidney dialysis

By KRISTIN PALPINI
Staff Writer

WHATELY - It wasn't the typical email forwarded from a friend - there were no cute kitties, corny jokes, or bizarre quizzes.

The email Meredith Schmidt sent to her family and friends was a plea for life.

"I am reaching out to all of my friends in the community to see if anyone might be willing to donate a kidney to save my life," she wrote in the email's opening statement.

Schmidt's original call for help has been forwarded beyond her immediate family and friends to a network of dozens of acquaintances.

Thus far, two people have gone through the four to six weeks of medical exams a donor needs to prove a clean bill of health and become a viable candidate. A friend of Schmidt's is now in the testing process, but so far a donor has not been found.

"It takes a special person to be willing to give up an organ," said Schmidt, a 56-year-old married Whately woman with a dog named Camber and a parrot named David. After a lifetime of kidney issues, Schmidt was diagnosed with chronic kidney disease in the summer of 2008.

"When it's close family and friends, all of mine said it's a no brainer," she continued. "When you go beyond that point, there are a lot of other considerations to be thinking about."

Schmidt, director of the Campus Center/Student Union Complex at the University of Massachusetts Amherst, is one of the 1,600 people in Massachusetts suffering from kidney disease and waiting for a transplant from a deceased donor. There are about 98,000 people nationwide in need of an organ transplant, according to Baystate Medical Center in Springfield.

New research published in the Journal of the American Medical Association confirms what doctors have known for years: donating a kidney does not shorten a donor's life, said George Lipkowitz, medical director of transplant services at Baystate.

Meanwhile, nationwide, some 17 to 19 people die every day while waiting for an organ transplant, hospital staff say.

While the surgical process for donating a kidney has changed dramatically - it can now be done laparoscopically, a minimally invasive form of surgery - the waiting period for a person in need of a transplant has increased. A person can wait up to 10 years for a transplant, although the average wait is 2½ to 4 years.

Schmidt, who has rare Type O blood, would likely have to wait 4 to 6 years for a kidney transplant, she said. She is trying to whittle down that wait by finding a "live donor," someone willing to donate a kidney to her or participate in an exchange. Exchanges occur when a donor is not a match for a recipient, but is willing to give a kidney to a stranger in exchange for a kidney that would be a good match for their loved one.

Schmidt said she has come across many people who are misinformed about the transplant process. It's not as scary or life-altering as people think, she said, especially for the donor. Schmidt agreed to be interviewed in the hopes that her story would encourage other people to donate organs or at least become more educated about the process.

"In my case, I could have been complacent - don't be complacent about your health," said Schmidt. "I feel like I want to talk to people and I want to tell them about my experience so that it might help them go through it."

Schmidt's story

Schmidt's doctor became concerned that there was something wrong with her kidneys when she stopped getting the kidney stones that had plagued her body for years. Worried there could be a blockage, she was referred to a nephrologist, a doctor who specializes in kidneys.

After some blood work and other tests, her doctor handed down the diagnosis that she had chronic kidney disease, which is sometimes called chronic renal failure. Both refer to the progressive loss of kidney function over the span of months or years. Kidneys are responsible for filtering waste from the body.

Doctors found that Schmidt's left kidney is significantly smaller than the other one. After an unknown number of years of picking up the slack for the smaller kidney, the right kidney is also failing.

"I was surprised and a little shocked" on receiving the diagnosis that she had Stage 3 chronic kidney disease, Schmidt said. Now she has progressed to Stage 5, the final stage.

"I asked myself what could I have done to prevent it," Schmidt said, "but there was probably nothing. This was meant for me."

Schmidt, who describes herself as an optimist, said instead of letting the news get her down, she decided to get educated about the disease. The more she learned, the less scared she became. She read stacks of medical reports, talked with people who have kidney disease, and surfed websites that include the National Kidney Foundation's www.kidney.org and the United Network for Organ Sharing's www.unos.org.

"I know the value of education," she said. "I wanted to find out who was doing the cutting-edge things and what I can do to get the best possible care."

Schmidt decided to go to Massachusetts General Hospital in Boston for her treatment. There her doctor established a regimen that seeks to transplant a kidney before symptoms of her disease take over and she has to go on dialysis.

Schmidt's search for a donor began soon afterward. Schmidt is on the national list to receive a perfect-match kidney, but because she has not started dialysis, she is not on the regional donor list, Schmidt said.

Two of her family members who seemed like they could be donors, did not pass the battery of medical tests required to donate an organ.

Schmidt's hope

Then Tracy Carroll stepped in.

Carroll, a 47-year-old reiki and emotional freedom techniques instructor in Leeds, has known Schmidt for 20 years. They were on a softball team together and have breakfast about once a month. They aren't the closest of friends, Carroll said, but when Schmidt told her that her immediate family could not donate, she felt compelled to take action.

"She was just so devastated," said Carroll. "I thought to myself, why not, why not see if being a donor is a possibility."

At first Carroll's decision to be a kidney donor caused a panic among her family and friends.

"It's a scary thing for the people involved in my life," said Carroll, "but as people begin to learn they calm down."

After understanding that Carroll's life and her quality of life would not be reduced by being a kidney donor, and that recovery from the surgery would take a week or two (not the six or eight weeks it took eight years ago), Carroll's loved ones became more comfortable with the idea of her being an organ donor.

They were also relieved by the knowledge that should Carroll need an organ transplant later in life, as a donor, she would be placed at the top of the transplant list.

"You go to the top of the list," said Lipkowitz, who said the benefit was granted nationwide about five years ago. "That only seems fair."

Carroll said she was nervous about telling Schmidt that she was considering becoming a kidney donor: "I was just nervous about telling her in case I changed my mind. I didn't know how to feel until I started the process. Something in me just said this is what I am doing."

Carroll has undergone all but one of the tests to become a kidney donor. The final test, a 3-D CT scan of her kidney, is slated for early May. Carroll is not a match for Schmidt, but is willing to donate her kidney to an exchange.

"If it's not me she'll have to start this process all over again," Carroll said. "Because I've gone through the process, I'm kind of glad. It's like, let's hurry up and do this."

Meanwhile Schmidt is preparing to go on dialysis, something she had hoped her search for a kidney transplant would circumvent. She had a fistula, a shunt that facilities dialysis, surgically implanted in her arm last week.

"I feel ready, but I have to find myself a kidney," Schmidt said. "I have to find someone who will qualify and who is willing to go through this with me. For some reason I feel very at peace with this and it's probably because I can rely on the great family and great friends around me."

Kristin Palpini can be reached at kpalpini@gazettenet.com.

http://www.gazettenet.com/2010/04/19/friend-need