I don't regret it: A kidney donor's pre-existing condition

Marci McKim's story:

I gave my husband a kidney in 2000 in the vain hope of keeping him alive until a match could be found (long story short). He never got the second kidney and died in 2002. I lost my corporate job in 2007 and have been unable to afford health insurance since then.

I don't regret the extra months of life I gave my dear husband; it was my pleasure to do so. But when I see articles about the lifesaving procedure today, I wonder why anyone would do it. Medicare covers the recipient, but the donors are left to the tender mercies of the health insurance industry, which considers us pariahs because we have a re-existing condition. If a live donor loses health insurance, there's no recourse.

Read a very different kidney donor story. Thanks to Marci for her letter to the editor of the New York Times on March 13, reprinted here.

After another week on dialysis he called back: Kidney donation

The first patient to list himself publicly on MatchingDonors.com was Bob Hickey, a psychologist in his mid-fifties who'd learned he had kidney cancer. At first, he'd done what his doctor told him to do: he went on dialysis, signed up on the official waiting list for a cadaver kidney in his region, and hoped that he would reach the top of the list before he died. His transplant center told him that he should expect to wait about four years.

On dialysis, you are attached to a machine for several hours at a time, usually three or four times a week, while the machine siphons off all your blood, cleans it of toxins, and injects it back into your body. Often the process leaves you too exhausted to work, or do much of anything besides recover. After four and a half years of dialysis, Bob, still waiting on the list, decided he'd had enough. He would rather die.

Less than a month later, he saw a newspaper article about a new company starting up – MatchingDonors. Bob phoned them, and the head of the company told him the service cost $295 a month, or $595 for life. Bob told him he was a carpetbagger and a rip-off and hung up. After another week of dialysis, he called back and signed on. Within a month, he had dozens of offers.

He screened them into a smaller set, and picked one at random: Rob Smitty of Chattanooga, Tennessee. The two men talked on the phone, and agreed. Bob was so excited that he jumped in his car and drove from Vail to Denver, more than 100 miles, to the transplant center to deliver the good news. The transplant center staff cautioned him, but accepted Rob as a donor.

Surgeons performed the transplant in October, 2004. Ever since, Bob has made kidneys his life's work. He advises people who are considering transplants. He raises money to compensate donors for expenses and lost wages. (Other forms of compensation for donors are illegal.) And he's fighting the kidney establishment on several fronts.

Advice: Read the stories at MatchingDonors.com

Read another story about a kidney match through MatchingDonors. Thanks to Larissa MacFarquhar for the source story in the New Yorker of July 27.

I am determined to have a future: Seeking a kidney

My name is Beth Abramowitz and I am 33 years old. I am married to a loving husband and together we have a wonderful and energetic four-year old son named Adam and a newborn daughter named Olivia. We live in Scarsdale, New York.

After the birth of my son Adam we learned that I had kidney disease. The disease has progressed over the years and we are now at a stage where it has become necessary to begin to plan for a kidney transplant. Our hope is that this transplant will enable me to continue me to live a normal and healthy life and enjoy many more happy years with my family. I have so much to live for and I am determined to have a future with my husband, son and newborn daughter.

Please contact me [at this web site] if you or someone you know is interested in considering the donation of a kidney. A potential donor needs to be under the age of 60 and have Type O (O+ or O) blood. I would be extremely grateful to anyone who might consider helping us.

Thank you.

Beth


Advice to those needing an organ replacement: Consider publicizing what you need on your own web site, like Beth.

Read a kidney exchange story.

Two compatible pairs: Paired kidney exchange

Thanks to a new program, a Georgia man and a Bessemer, Alabama, woman who both expected to wait many years for kidney transplants received new organs. More than a year ago, they were the first patients to receive a paired kidney exchange that matches a patient who has a willing, healthy living donor — sister and fiancé, respectively, in this case — with another donor and recipient, forming two compatible pairs.

The donors and recipients: Recipient James Thorn Jr., 38, of Bainbridge, Georgia, and his sister, Cynthia Rayburn, 42, of Jefferson County; and recipient Dwana Lewis, 29, and her fiancé, Alex Caldwell, 40, both of Bessemer. In the exchange, Cynthia donated to Dwana and Alex donated to James.

This was the first such procedure performed at the University of Alabama. All patients were recovering well and are listed in Good condition, transplant surgeon Alex Hawxby said. The recipient patients James and Dwana were to be discharged from the hospital within a few days while their immune-suppressing medications were being adjusted.

In such a procedure, both pairs of patients initially are kept anonymous from each other. When admitted to the hospital, they are assigned to different nursing units, go to different pre- and post-operative areas and return to separate nursing units afterwards. Their families wait in different areas, also.

To prevent any possibility that one of the donors might back out of the operation at the last moment, all the patients are simultaneously put under anesthesia.
Matching the appropriate incompatible pairs is a complex undertaking that requires additional staff and operating rooms, and a carefully choreographed operating room process, according to Dr. Eckhoff, who is director of the UAB Division of Transplantation. "The UAB Transplant Program has committed considerable resources for this program because of its great potential to provide relief to many of our patients," he said.

National Kidney Foundation President David G. Warnock, who is director of the UAB Division of Nephrology, noted: "This development marks an important milestone in the ongoing growth of the UAB transplant program. It will broaden the choices of patients with chronic kidney disease who are needing living donors for transplantation."
Nationally, the number of donated kidneys coming from living donors has increased dramatically in the last decade, as kidney-failure patients realize that the number donors available through organ banks is not rising by much. Family members and other loved ones may want to volunteer to donate one of their kidneys, but frequently are turned down for medical reasons. Others are told they cannot donate to their relative or friend because they have tissue characteristics that are incompatible or because the patient's blood contains proteins that would cause the kidney to be rejected.

UAB transplant doctors hope the Living Incompatible Kidney (LINK) transplant program will reduce long waiting times and help ease the organ shortage. Dr. Hawxby said, "As many as a third of patients are incompatible with their potential living donors. With the new paired kidney exchanges through LINK, a donor freely offers a kidney to a stranger in order to get their own loved one transplanted by another donor with a reciprocal situation. Many dialysis patients are on our transplant waiting list, which is why that list now numbers more than 2,400, with waiting times for transplants of typically four to five years and sometimes more."

Several more paired kidney exchanges are being evaluated.

Drs. Hawxby and Mark H. Deierhoi led James' operation, and Drs. Devin Eckhoff and Harry Sun led Dwana's surgery.

Advice to those needing a kidney: Look into innovative programs of kidney exchange like this one.

Browse for similar stories in our index at the very bottom of this page, or read a kidney transplant story.

Thanks to Hank Black of the University of Alabama for the source story.