Skip to main content

This is part of a series that looks at extraordinary experiences in personal health. Share yours at health@globeandmail.com.

Annette Hinrichs-Pymm, 55, lives in Richmond Hill, Ont. Here is her story. Her son's follows below.

When I was diagnosed with the disease, the kids were small. My doctor said I had 10 years to live and I lasted 12 before getting the transplant. As a mother, I thought I'd never see my kids grow up.

PSC (primary sclerosing cholangitis) progresses slowly, but the past two years were not good. I deteriorated very rapidly. The bile ducts close up due to inflammation and the bile seeps into the liver and destroys the liver cells, and as a doctor explained to me, you digest yourself. You get high fever, lots of pain and you get confused in the end. I was yellow and green. I lost, I think, 20 kilograms in a very short time.

A liver donation is not an easy thing to decide on. I asked my boys to go on Facebook to look for living donors for me. A nurse had asked, "What about your children?" And I said, "How can I do that?" She said, "Well, the child doesn't want to lose the parent; the parent doesn't want to lose the child." And that's true.

But I didn't ask them to sign up to get tested; I wouldn't. And anyway, that's coercion too because then they'd feel guilty if they said no. But my oldest one, Phillip, he signed up to be a donor right away and Martin too.

When I thought about what they might have to go through, I felt terrible. It's your own son and you're worried there's a chance you might lose him. But when they rejected Phillip as a match, I was devastated. I was suicidal. Because Martin was so young, I didn't even think he would be accepted.

In the end, I think you cling to life. The will to live is there and it pulls you through.

After the surgery, I went in to see Martin and I held his hand. "My Martin," I said to him. "I won't forget."

He has no pain tolerance, and I didn't realize that. So he was just using the hand-held pump to pump morphine into himself. I felt guilty that he did that for me.

Since I was so ill before, my liver was so shot, after getting 60 per cent of a healthy liver, I felt fine. I mean, I felt pain, but my pain tolerance is pretty high. So I felt guilty that I felt so good and he felt so awful. It's a guilt that doesn't really go away. You carry that with you. There's a fear that something might happen down the road with him. So I think I understand why people do anonymous donations.

I also feel sorry Martin lost his gallbladder; they had to remove it during surgery. That really struck me. I knew the liver would regrow, but he's so young. I haven't told him, but I keep watching what he eats.

There's no sign he has any digestive issues, but I'm always looking him in the eyes to make sure they're not turning yellow. His whole life is ahead of him. If I keep talking about this, I'm going to start crying.

Health wise, I feel like I can do stuff now that I couldn't do for years. I have to take pills for life, and that's fine. The medication I take now, they cause kidney failure eventually, so I don't drink. I have side effects from the pills, but I'm learning to accept them.

I feel honoured that they did it. Both of them. Now with Martin giving me the liver, it's brought us even closer together.

***

Martin Hinrichs-Pymm, 19, is studying voice performance at Wilfrid Laurier University in Waterloo, Ont. Here is his story.

The doctors had told me, "You're going to feel like you're hit by a train. You're not going to see what's coming." They were so right. It was just painful. I didn't realize it. I had no clue what I was in for. The moment I woke up after the surgery, I couldn't wish it on another human being, on my worst enemy.

If someone had asked me at that point, I'd say "Don't do it. Don't do the transplant." I kept thinking, "Why did I do this? Oh my God." I felt so horrible. And I was so paranoid of everything. I thought they were giving me placebos instead of pain medication because I couldn't sleep. I was a mess.

I thought, personally, I'd be up walking in three days. It took two weeks before I could even walk like a man in his 80s. It was like learning to walk all over again because you're stumbling and you're weak, and you're trying to get your balance.

In the hospital, I kept asking the doctors, "When is it going to end? Like, give me a day. An hour. What time is this pain going to stop?"

And they'd be like, "Well, it's different for everybody." And I'm like, "No. Answer the question!" But of course, they really don't know. They said, "Oh, maybe in four or three days …" And that was even worse. What do you mean four or three? Which one?

It took me three days to have a bowel movement, which I was really impressed with. It sounds gross. But I thought it would take me a week, just because of all the drugs I was taking. I told the nurses, "Come to the washroom! Come to the washroom! You won't believe what happened!"

But everything made me sick. I was in the opera and I figured I was going to bring all my scores so I could study them to pass the time. But I couldn't do it. Everything made me nauseous. Everything. I'm a huge fan of Verdi and Wagner, and I couldn't listen to it. It made me want to vomit. It was so overwhelming for my brain, I guess, that my brain was just like, "No, no, no, not now."

The first three days I was on a liquid diet, just broth and Jell-O. When I could finally eat solids, they gave me a tuna sandwich. I hate tuna sandwiches, but I just scarfed it down like a coyote. Grape juice was the best thing ever to me. I never used to drink it before, but I fell in love with grape juice. Pickles too. I mean, I liked pickles before but I went crazy over them after the surgery.

It was probably a month and a half later before I felt okay enough to go back to work. I still had some issues, some bowel problems; I just had to go to the washroom more than the average person – like run to the washroom. I worked at a car dealership and my job was to wash cars, which I was totally fine with. As long as I didn't have to lift a car, I was okay. For three months, I wasn't allowed to lift more than 10 pounds.

I now have a scar the shape of a hockey stick, about four inches long, that goes from the tip of my sternum to right above my belly button.

I'm very proud of what happened and what I did, but I see it as me giving back to my mom; she gave me life, I repaid the favour. Personally, I see my mom as the hero in the whole thing because she had to bear through it all. She had to suffer for years and years. She's a rock.

This has totally changed our relationship. Totally, totally, totally. For the rest of our lives, we'll always, always look back to this. Even though I'm going to university, I'll always be there with her. A part of me will, literally. Haha. And that comforts me a lot. In a way, she's never alone.

Read more stories in this series here.