Frank Needs A Liver is the name of his website, and his plea.
Frank Reiter’s cirrhosis of the liver has left him so addled he couldn’t read a clock, it has seen him bleed out in the ER at Ridge Meadows Hospital, and it has him wondering if he will find a donor in time.
He’s finally on the list to get a transplant, and just needs a liver donor. It’s been a trial already.
“I have been trying for more than a year to get on the list,” he said.
Finally getting listed for a transplant means he could get an organ from a cadaver, but Transplant BC prioritizes patients based on how critical their condition is, he explained. He might have to get a lot sicker.
“People die on the list, waiting for a liver,” said Reiter.
He’s working hard to find a donor.
A non-drinker, his cirrhosis was caused by fatty liver disease. When he got the diagnosis – which impacts about one-in-five Canadian adults according to Liver Canada – he took it akin to his doctor saying something like “You should lose 20 pounds.”
“Nobody ever made it sound like a big deal,” he said. “If anyone you care about gets a fatty liver, make sure they know how serious it is, because it can become cirrhosis, and kill them in the most painful way.”
“If I had known my life depended on it, I would have taken it more seriously,” he said. “Treat it like something that will evolve into a death sentence.”
His cirrhosis caused swelling in the veins in his esophagus. Feeling sick, he went to the ER, and was fortunate that he was there when the vein burst. Even there, he almost didn’t make it.
“I bled out in the ER, and my heart stopped. My poor wife got to see that – my blood all over the floor,” he said. “That’s when I started really pushing to be on the transplant list.”
After that incident, he said some health professionals who treated him that day seemed surprised to see that he had pulled through.
Cirrhosis causes a buildup of ammonia in his system, which impairs neurological function. Reiter gets confused, sometimes has difficulty concentrating, and needs periods of hospitalization to recover. He’s had five visits to the hospital in the past year.
“Every time I come out, I come out weaker,” he said.
Day to day it impacts him.
“By supper time, I don’t remember what I did in the first half of the day,” he said. “My wife (Nicole) is my outsourced memory.”
Mental acuity hasn’t been an issue for Reiter – this is a onetime software developer who built the first Internet service in Western Canada in the mid 1980s. He later sold his company, and has been a mental health peer counsellor – after suffering with anxiety disorder for most of his life.
“Peer counselling has been the most rewarding work of my life,” he said. “Most days I left the hospital knowing I’d helped someone.”
He has trained others in the field. But he hasn’t been able to work in a year.
He’s inspired by Buddha, and relaxes by weaving on a loom. Nicole hand spins wool, and they used to keep alpacas.
“I was looking for an artistic outlet,” he said. “I just love it. It’s a moving meditation.”
Now Reiter just wants to get a new liver, and get his life back.
“My whole life has been focused on this for a long time,” he said.
The great thing about being a liver donor is doctors just take a piece of the organ. This body part re-grows, so both donor and patient will have a full-sized liver again.
Whatever costs the donor has, BC Transplant will reimburse them.
After a transplant, Reiter expects a near full recovery. He’s heard about other patients who get sudden mental clarity just a day later. He wants it for himself, and his loved ones.
“I look forward to my wife not having to worry so much,” he said.
Reiter has already heard from people who are willing donors, and they have contacted BC Transplant. He needs someone who is aged 19-55, of blood type O- or O+, and a good match. He hasn’t found one yet.
He has a website that offers more information at frankneedsaliver.com