National kidney transplant wait list changes to go in effect (next week!)

[Clark]

http://www.cleveland.com/healthfit/index.ssf/2014/11/national_kidney_transplant_wait_list_changes_to_go_in_effect_uh_doctor_helped_develop_criteria.html

National kidney transplant wait list changes to go in effect; UH doctor helped develop criteria

Changes to the way the national kidney transplant wait list is administered will take effect next week, a move that will benefit people who typically wait longer than others for a new kidney.

Michael Brown of Euclid, who has been on dialysis since he was 20, said he'll be ready for a transplant when the call finally comes.

"The average wait for someone in Ohio is something like five years," said Brown, 31. He's been on the transplant wait list for three years.

Still, he said, "You never know. You never really know what's going to come available when."

On Dec. 4, the United Network for Organ Sharing, which maintains the country's transplant database, will enact new kidney transplant policies.

One of the criteria for matching someone on the wait list for a donor kidney is the length of time they have been on the list. For people who began dialysis before being added to the list, the new policy now calculates the waiting time from the date dialysis started.

Children who need a kidney transplant will remain at the top of the list because they face growth and developmental issues the longer they have to wait.

Brown is among the nearly 102,000 people in the U.S. - including more than 2,500 in Ohio - currently on the kidney wait list. When he was 20, he started dialysis after his kidney function – which had begun to decline when he was around 12 years old – dropped to 10 percent of normal function.

But as physically and mentally draining that dialysis is - three times a week, four-and-a-half hours at a time - Brown didn't explore the option of a kidney transplant right away.

Part of the delay, he said, was being told by physicians at another hospital that he was too heavy for transplant surgery.

Brown also said he has never been comfortable asking a friend of relative to donate a kidney to him.

Fear was another factor in his not pursuing a transplant.

"I've never had surgery before," he said. "Someone's organ being taken out of their body and put in your body, that's a jarring situation."

Over the years, Brown has lost about 30 pounds from his 6-foot-1 frame. And after changing physicians for his kidney care, and hearing about the benefits of transplant surgery, he began to look at things differently.

Three years ago, the transplant team at University Hospitals Case Medical Center – which performs a couple of kidney transplants each week - placed Brown on the kidney wait list. His wait, doctors told him, would be at least five years.

With the policy changes, Brown's credited wait time will be recalculated from three years to 11 years.

It's impossible to pinpoint how the alterations to the kidney allocation system will impact the wait time for a specific person, said Dr. Mark Aeder, a member of UH's transplant team and vice chair of the committee that developed the new policy.

For a small number of people currently on the list, several years of waiting will be shaved off immediately, he said.

For the vast majority, where they live and what their blood type is will continue to be a factor in how long they will wait.

"There are some areas of the country where people wait for 10 years, while in other parts the wait is a year and a half," he said.

But the new policy can only help patients like Brown, said Aeder, UH's director of surgical quality and associate professor of surgery at Case Western Reserve University School of Medicine.

Aeder said he understands why someone would spend so much time on dialysis before consenting to be placed on the wait list.

"If someone's kidneys have failed, and the doctor says go on dialysis right away, it's a matter of trying to keep you alive for the next week," he said.

Many people who start to feel better with dialysis get accustomed to that being part of their regular schedule, he said. "Some people may say, 'I'm doing OK, I don't know if I want to have surgery.'"

For now, Brown is trying to maintain a healthy lifestyle – including abstaining from alcohol – and staying away from sick people.

The rigors of dialysis forced Brown to abandon his studies at Kent State University during his sophomore year. Last year, however, he enrolled in an online program at the University of Phoenix, and will finish up the requirements for his marketing communications degree in January.

"I didn't want to be considered an invalid," said Brown who, for the past three years, has been with the Cleveland Indians organization in Guest Services, and short-term acting gigs throughout the community.

"I wanted to show people I still could work and function on dialysis."

But now, Brown said, he's ready for a new kidney.

Along with the change in calculating the amount of credited wait time, other UNOS policy changes will be enacted:

* Patients with lots of antibodies in their blood that make it difficult to find a compatible donor, and are at risk for rejecting a donor kidney, now get priority on the list across the country. So if a donor kidney becomes available in Florida and a patient fits the bill in Washington state, the Washington state patient will get it over someone in southeast United States for whom a match is easier to find.

* Patients with type B blood tend to wait longer than any other blood type groups because they make up only 5 percent of the population. But some are able to get certain A-blood subtype kidneys without fear of rejection. Under the new system, people with B blood types who don't have high levels of A-type antibodies will be moved higher on the list.

* In an effort to increase the time between transplants, kidneys expected to last the longest (because they come from younger donors or are in the best shape) will be matched with the 20 percent of patients who are expected to need a kidney for the longest period of time.