Lack of kidney donors means some die waiting

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BUFFALO, N.Y. (WIVB) – Mike Weishaupt needs a kidney.

He has a rare B positive blood type which makes him a tough match.

“I just want to live,” said Weishaupt. “I would like to be around for my grandchildren. They are real young. I want to see them grow up. I want to see them go to college. There’s other people out there who need a kidney too.

His life line is going to dialysis three times a week.

Weishaupt is one of the 800 patients in western New York waiting for the 50 kidneys that become available for transplant every year from deceased donors.

For all of them it’s a painful waiting game that recently got worse.

News 4 Investigates took a behind the scenes look at what people like Weishaupt go through to get one of these precious organs.

“They die waiting. Not everybody can be transplanted from the deceased donor pool,” said Dr. Liise Kayler, program director for the ECMC’s Regional Center of Excellence for Transplantation & Kidney care. “We just have to do our best with the resources that we have.”

Kayler joined ECMC in June as the program director of the hospital’s regional transplant center.

She’s reviving the live donor program which closed voluntarily in 2014 after a donor died from an illegal drug overdose. The center does only pancreas and kidney transplants.

Kayler’s priorities are to cut the waiting time for patients to get onto the transplant list and to introduce the laparoscopic surgical method so more people can become donors.

“They basically return to normal much faster with the new minimally invasive approach,” Kayler said. “We’re very careful not to let people donate if they are not absolutely healthy and able to donate with very minimal risk.”

Kayler’s focus on live donors is deliberate. Live donors are few but increasing in number.

“If you have a live donor, not only does that kidney last longer but there is no waiting time.”

Most kidneys come from deceased donors.

Who gets them nationwide is decided by the non-profit United Network for Organ Sharing which recently changed the rules.

“That’s been one of the shocks to the system,” Kayler said. “After Dec. 4, 2014 actually fifty percent of our kidneys were mandatorily offered to other patients outside of our area.”

The goal of the new rules was to get kidneys to hard-to-match people some of whom have been on dialysis for 15 years.

Kevin Gramlich heads up organ services at UNYTS — the local agency that distributes the kidneys from deceased donors.

He said the new system is getting kidneys to those who have been waiting the longest.

“So in the next year or two years we should start to see local organs staying local more frequently again,” said Gramlich, vice president of organ services at UNYTS.

But the real solution, he said, is to get more people in New York State to sign up for organ donation.

“We have the lowest percentage of the population registered to be an organ donor or a tissue donor,” he said referring to data compiled by Donate Life America, a nonprofit that advocates donations listing New York State with only 22 percent of adults as registered donors.

Given the critical need for organs Gramlich urges families to talk before a tragedy strikes.

“The more people we can get talking to their families, sharing their decision and getting them on the registry either through the DMV or going to a local website is critical so when they are in the hospital in a situation, they know what their loved one wanted,” said Gramlich.

At ECMC, which only does kidney and pancreas transplants, the scarcity of organs from deceased donors puts a focus on the waiting list.

“It’s a very complex process,” said Kayler.

She explained the process for patients who are on the waiting list for kidneys.

“They get points for having certain problems,” she said. “They get extra points for having anti-bodies which makes them hard to match. They get extra points if they are pediatric patients. They get a point a year for being on dialysis. All of these points add up then they are rank ordered according to their points.”

Kidneys are the most in demand organ.

Of the 121,471 patients waiting nationwide for a transplant, more than 100,000 are waiting for kidneys. Last year was a record-breaking year for transplants with 30,973 of which 17,875 were kidneys.

In New York, state law limits patients to one list but federal rules allow patients to sign up at hospitals around the country. It’s a strategy that favors the wealthy, says a Columbia University Medical Center study.

“They are not gaming the system. They are playing within the rules,” said Dr. Raymond Givens, study author.

“What it has done is heightened the socio-economic differences in terms of access to transplants.”

Kayler said most patients just don’t have the money to travel out of state and live there during the transplant process.

The Weishaupts tried going to Cleveland but just couldn’t afford it.

“It’s expensive. We would have to constantly go. I’d have to take off from work,” said Sharon Weishaupt, wife of the kidney patient.

Kayler said a patient’s best hope is a live donor. And even if there isn’t a match, the hospital can arrange a swap with someone who is.

“It really amazes me how many people come out of the woodwork wanting to donate,” Kayler said. “I understand it to a large extent because donating, once you’ve donated. It’s such a great thing. You live the rest of your life knowing how much you impacted somebody.”

Mike Weishaupt’s only hope is someone with type O or B blood.

“It’s very hard for a B positive with a cadaver,” said Weishaupt’s wife, Sharon. “That’s why we are asking the public to come forth.”

Weishaupt lost his kidneys to diabetes. He had a transplant in 2001 that lasted until last year.

To stay alive he spends more than ten hours per week on dialysis.

It’s a tough road for a guy who’s afraid of needles.

“I don’t know what it feels like to be normal anymore. I’ve been sick for so long for so many years. I just wish I could have a kidney so I can feel better.”

Over a year ago the Weishaupts scraped together savings to rent a billboard along the 190 north near downtown to ask for volunteers. While many called, no one became a donor either for Weishaupt or anyone else.

These days the Weishaupts are praying for a volunteer who matches.

“I know it’s a lot to ask but we are begging the general public to please come forth and donate a kidney to Mike as well as everybody else,” said Sharon Weishaupt.

Mike lives for his grandchildren. Over Christmas he was sick and couldn’t visit with them.

When he’s away from them the 64-year-old grandfather of three enjoys looking at their photos and the cards made for him by his 8 year old granddaughter.

“I keep them all. I’ve got a shoebox. I keep everything she makes for me so I can show her when she gets older what she’s done for me her grandpa.

I love my grandkids. I love them so much and I miss ’em.”

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