Top Tips for Surviving the Transplant Wait List

Marty Martin, of Fern Park, Florida, is a two-time kidney recipient who has seen both sides of the transplant process.

The 69-year-old received his first donor kidney from his brother in 1988, a gift that lasted 15 years.

“I had no idea my kidneys were failing, because I wasn’t paying attention to my body,” Marty said. “When I did go to the doctor, he put me on dialysis right away, saying if I waited, I would be dead tomorrow. I was lucky that my brother was a match and I could quickly get off dialysis.”

But when his first kidney transplant failed, Martin had no more living donor possiblities and began the process of being placed on the waiting list for a deceased donor kidney. This time, he found out it wasn’t quite as simple.

“Even when I had a donor lined up, it took a long time from the time my brother agreed to donate until the surgery took place,” he said. “But the second time, going through all the tests all over again, it was torture.”

There were colonoscopies, bladder tests, stress tests, breathing tests, questionnaires and of course, lots of blood work and urinalysis. While the tests seemed daunting, Martin also had to go to different hospitals which had different transplant requirements, requiring him to take even more tests. But often the biggest frustration wasn’t the tests themselves, it was trying to schedule them in a timely manner.

“I’d call to make an appointment, and I would say, ‘How about next week?’, and they would say, ‘How about in two months?’” Marty recounted. “For someone who is waiting and anticipating being on the list, that is a long time.”

In total, it took about a year to get all of the tests he needed to be placed on the transplant list.

“If they could speed up the process and increase donor education that would really help,” he said.

Martin’s experience is not unique. A study published in a recent issue of the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation, found that one-day transplant evaluations could get patients added to the wait list, on average, 180 days faster.

The results were even better for African Americans and Hispanics. Those who underwent traditional evaluations had to wait, on average, 360 and 357 days to be listed, respectively. With the one-day work-up, listing times were reduced to 55 and 73 days, respectively.

Doctors have found that getting on the list quickly can lead to a obtaining a transplant much quicker, which has a positive outcome on patient health.

“Studies have shown that the longer a kidney patient waits to be placed on the list, the higher the risk of death following a successful transplant,” said Sanjay Kulkarni, MD, the lead author on the study and the Director of Kidney & Pancreas Transplantation at Yale University School of Medicine. “By markedly reducing the listing time, we hope to improve patient survival following transplant, increase access to a kidney transplant faster, and decrease dialysis exposure.”

Luck did favor Martin. After he was listed, he received a transplant two months later in early 2003.

“The testing drove me nuts, and this one-day evaluation seems like it would really help move the process along,” Martin said. “It’s already hard enough with so many people trying to find donors, but when I finally did get on the list, two months later, look whose name popped up.”

Now Martin has a few pointers to share with others in the same boat.

Marty Martin’s Tips for Getting on the Transplant List

1. Determine What is Wrong and Strive to Fix it

Follow your doctor’s recommendations to be as healthy as possible and increase the chances that you will be added to the list more quickly. Marty said, “For example, if you are overweight, watch what you stick in your mouth. Take a hard look at your diet. Get anything sweet out of the house. It’s difficult to do, trust me, I like sugar.”

2. Stay Active

“Keep yourself as mobile as possible. Do something, anything. It will make you a better candidate.” Talk to your doctor to find out what will work best for you.

3. Always Be Positive

“When I go to the doctor’s office, they are glad to see me. There is a waiting room full of people and I talk to patients and other nurses, now they all know me and call me by my first name. If you can keep an upbeat attitude, that can make the difference. Have something good to say, put the doctor in a good mood, always insist how you are ready for your transplant. The doctor will know how you are doing based on your labs, but nothing can replace a positive attitude, that doesn’t show up in a blood test. And, if you have religious ideals, remain spiritual because it can’t hurt.

4. Constant Follow-Up

“Don’t just get on the list and tune out. Remind your doctors about your situation. Ask them if there is anything you can do to help along the process. Call up the transplant center and find out where you are on the list, and ask them what your status is. Keep your eye on the calendar.”

5. Keep a Good Sense of Humor

“Have a sense of humor, even if you are not feeling well. Sometimes things won’t go your way, but you always have to project an image you are healthy and ready for a transplant. You have to sell yourself. I believe in all that stuff, that is what works for me.”

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