New rules for liver donations leave patients in the Midwest left waiting

Gary Gray is retired and enjoys camping and playing the banjo. There are countless other things...
Gary Gray is retired and enjoys camping and playing the banjo. There are countless other things he’d like to do—but he can’t.(Greg Milota/KCTV5)
Published: Oct. 3, 2022 at 12:49 AM CDT
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KANSAS CITY, Mo. (KCTV) - Gary Gray is retired and enjoys camping and playing the banjo. There are countless other things he’d like to do—but he can’t.

He’s exhausted much of the time and must rely on others to drive him where he wants to go. Gary suffers from a rare liver condition, takes 15 medications a day and struggles with side effects. He’s sick and needs a liver transplant, but he’s not yet sick enough. Gary says unlikely to get a liver from a deceased donor before he’s too sick to survive the transplant.

“Gosh, I miss everything,” said Gary. “Common, day-to-day stuff that I would never thought would mean that lot to me, but just being able to hop in the car and go to the Quick Trip, get a fountain drink is something I can’t do. I can’t drive. Long walks? I run out of energy after 100 yards or so.”

When Gary first got his diagnosis a couple of years ago, he and his wife Beth were grateful they lived in Kansas. Liver donations are higher in the Midwest than in some other areas of the country. And donated organs used to stay local. But over the years, the rules have changed. Now, there’s a great effort to share organs across the nation—flying them in airplanes across the country to get to the sickest patients, no matter where they live. That means more organs from the Midwest are being flown up to 500 Nautical miles away. Meaning livers are being sent as far south as Louisiana and Texas north to Wyoming and North Dakota.

Local doctors say that while that sounds good, it doesn’t solve the problems.

“Finding new ways of dividing up that pie or sharing organs is just an incomplete measure,” said Dr. Ryan Taylor with the University of Kansas Health System. “We need to find ways to actually increase the number of transplants and are available organs, so patients get that chance.

He points to the transplant program at the health system:

In 2017, The University of Kansas Health System did 90 liver transplants.

In 2020, there’s a noticeable drop to 45.

That’s when the new sharing rules went into effect. It happens to coincide with the pandemic, but liver surgeries have been increasing nationwide, but dropping in our area.

“The danger is that I die while I’m on the waiting list,” said Gray.

Doctors point out that there’s not a surplus of livers in the Midwest. Every year, people die while waiting for an organ, or become too sick to qualify for a transplant.

“We care very much about our patients,” said Dr. Ryan. “And this has been incredibly hard to see the impact on patients and families who just want a chance to live and to have their life back. And to now have additional challenges and hurdles to overcome makes it even more difficult.”

Gary’s disease is progressive, but his MELD score (how they measure a patient’s level of sickness) doesn’t reflect that. The bottom line is he’s much sicker than his score indicates. He’s lost faith in system that is not working for him.

Gary’s family took to social media searching for a living donor.

“My wife, her sister and sister-in-law organized kind of a big campaign for Facebook, asking people that if they’re type o positive, which I am, to get on the University of Pittsburgh website and sign up,” said Gray.

So now, all Gary can do is wait—and hope he doesn’t get sicker before a living donor can be found.

The transplant is not without risks to the donor. About 1% experience major complications or death. It’s not like a kidney donation where you remove an organ and transplant it in someone one. Instead, the liver is sliced in half—it’s a very complicated surgery. The liver from the healthy patient is removed and carefully cut in half. Each patients receives have a liver. The liver should grow and regenerate to full size for both the donor and the transplant patient.

As a result of the allocation issues, The University of Kansas is looking into starting a living donor program.

“It’s very hard as one of the providers taking care of him, to see the suffering from liver disease, the impact it’s had on him and his family, his ability to have a normal day has completely changed,” said Dr. Ryan. “And so, when we start to see that the system isn’t going to serve the patient, we have to look for other ways to get them through that. And that’s naturally when the conversations drift to the living donor transplant option.”