A waiting game
Dan Botner of rural Garfield never put much thought into organ donation.
He was identified as an organ donor on his driver’s license because it was “the right thing to do,” but beyond that, he said he didn’t give it much thought...until he found himself in need of a liver transplant.
A STARTLING DIAGNOSIS
Last year, Botner decided to try a vegan diet to get his cholesterol under control. He had great results, with his cholesterol dropping significantly. But so did his weight, enough that his wife, Pat, became concerned.
Later he started experiencing some numbness and weakness.
A visit to the Mayo Clinic in Rochester in January showed he was suffering from peripheral neuropathy, a result of nerve damage that often causes weakness, numbness and pain, usually in the hands and feet.
Other tests were done to determine the cause, and in February, Botner was diagnosed with familial (hereditary)amyloidosis, a rare liver disease (see sidebar).
“I wasn’t too concerned,” he said. “I just figured they’d give me some kind of pill and we’d be done with it. I was pretty naïve to make that assumption.”
Botner’s amyloidosis mostly affected his nerves, leaving his feet stinging or burning.
“I just dread going to bed, because pulling the sheet over my toes burns to the point where it’s almost unbearable,” he explained.
Botner was given some medications to ease the pain and in March was put on a waiting list for a liver donation.
“The average wait is 18 to 24 months,” he said. “Each person is assigned a MELD (model for end-stage liver disease) score ranging from 6 to 40. The higher the number, the sooner you get a transplant.” Botner’s score was 22.
THE WAITING GAME
Besides the painful burning sensation in his feet, Botner also suffers from fatigue and difficulty walking.
“My gait has changed completely,” he said. “I run differently now. It’s actually quite comical.”
He is also struggling to keep his weight up. At the time of testing he weighed 143 pounds. He has managed to get that up to 162.
“Basically I eat everything that’s not nailed down, but it just doesn’t stay on,” he said.
As with all organ donations, time is of the essence for Botner.
“Every day I do not have a new liver, my own liver continues to attack my systems and organs, causing further deterioration,” he explained. “The extent of damage one has at the transplant date is the amount one will live with for the rest of his or her life.
Botner’s situation is one that can benefit from a live donor. Because the liver is the only interior organ capable of regenerating itself, a person can give up about 5/8ths of their liver and still maintain a normal lifestyle.
Both the remaining portion of the liver in the donor and the transplanted portion in the patient can regenerate to create two full, healthy livers.
Currently, four people have come forward offering to donate portions of their liver to Botner.
To be a match, a donor must have the same blood type and undergo a medical and psychological assessment.
“If there is a match, I could possibly get a transplant in three to four months,” Botner said. “I am hoping that is the route we will be able to go. I am cautiously optimistic.”
A HOPEFUL FUTURE
The couple had been making plans for things they hoped to do following Pat’s retirement in June. They hadn’t anticipated this setback.
“I’ve always been pretty healthy,” Botner said. “I certainly didn’t expect anything like this. Now it’s a waiting game.”
The transplant won’t completely fix the problem, but it will give Botner a chance for a fairly healthy lifestyle.
“I will spend the rest of my life on immune suppressants and will have an increased risk of cancer,” he explained. “I’ll have to be careful in the sun.”
He is also taking part in a clinical trial to test a new medication.
“Some will get the drug and others will get a placebo, so there’s no way to know if it will help anything,” he explained. “But I can’t risk it and do nothing.”
“This has been a whole new world that I never knew existed,” he said. “It was a real eye opener, especially about organ donation. Even though I was a donor, I was so clueless about all this. Awareness is so important.”