I was about 27 when I first noticed the symptoms: severe pain in my side, growing fatigue. When I finally sought help, I was given a blood test. The test usually spots 90 percent of those with the disease. Turns out, I was in the 10 percent of those for whom it didn’t.
When the symptoms persisted for six months, my doctor ordered a biopsy. I knew it was serious when he called me at 7 p.m. that night, a Friday night. “There’s a problem with your liver,” he said. “We need to get you to a specialist as soon as possible.”
I was in the specialist’s office at Harborview Medical Center that Monday morning.
The diagnosis was primary biliary cirrhosis. It’s an autoimmune disease in which your body’s own cells attack the liver, creating scar tissue that destroys the bile ducts. And it turned out that one of the leading experts on the disease is a UW Physician at UW Medical Center. I was referred immediately.
I think it’s my nature to focus on the best-case scenario in things. Is it denial? Wishful thinking? Hope? Whatever you call it, I’d convinced myself that I would be one of the lucky ones for whom the disease progresses slowly. I pictured having 20 years or so before serious problems.
But only five years in, I was told that my disease was progressing unusually fast. I needed to get on the transplant list.
The news practically floored me.
My liver was being attacked far more aggressively than anticipated. This was causing everything from intense pain and fatigue to ammonia leaching into my bloodstream, which had a direct impact on my brain function. And my husband especially noticed the yellowing of my eyes from jaundice.
Simply being added to the transplant list is a process involving test after test for eligibility. While grueling, it helps ensure that recipients will have the best possible chance. But it also gives you a lot of time to dwell on the gravity of what you’re moving toward.
My husband was having an especially difficult time coming to terms with it all, and the staff at UW Medical Center took extra care to educate us on everything. They kept us informed and patiently answered every question; never once did we feel as though we were in the dark.
I made it onto the list. And while I tried my best to remain active as I waited, my quality of life was clearly declining. Before long, simply getting off of the couch was too much.
Then it was time. I went to the hospital where they ran the last few tests to be sure my body could handle it, and then we moved into surgery.
For the seriousness of the procedure, it was surprisingly quick — only four hours. And through it all, nurses would come and give my husband updates on what was happening now and how everything was going. They were simply amazing in their attention to detail.
Everything went smoothly. As the nurse put it, the liver “popped right in.” And the effect was almost immediate.
I was pretty out of it for about 24 hours. But one thing I remember was opening my eyes and the first thing, the very first thing my husband said was, “Oh my God, your eyes are clear!” It was that fast.
There were a few complications during the course of my recovery that were caught and addressed right away, and now my visits are down to once every three months.
It’s impossible for me to talk about this experience without acknowledging the gift of my new liver. The gift of one individual that enabled me to keep living. With this gift, I also received an unexpected sense of responsibility. I wasn’t ever unhealthy before, but I wasn’t a runner, either. In fact, I never really undertook anything much beyond a day hike.
I remember feeling this responsibility when I first spoke to my nutritionist before leaving the hospital. We talked about the right foods to eat and the importance of getting enough protein. And after her nutrition talk, she said, “What you really need to do to get back on track is get moving. And I know just how to get started.”
She introduced me to Team Transplant, a group of amazing people who have undergone transplants similar to mine and now run and train together. At the time, just walking down the hospital corridor was a chore for me, but I knew that I needed to do this. To earn what was given to me.
And so I worked at it, slowly at first. Then I gradually built up my endurance. On a trail that’s near our home, there’s a small wooden bridge about a mile out. It stands out in my mind because I remember when simply walking to that bridge took all I had. Thanks to the support of my husband and my teammates on Team Transplant, today I run past it.
I have now completed 18 half marathons and, at 42, am in the best shape of my life. Would I ever have done this if I hadn’t needed a liver transplant? I can’t say for sure. This experience has changed everything for me. I’m healthier than ever. My husband and I are closer than ever. And I am more grateful than ever for the little things.
There’s a kid who recently joined Team Transplant. Just 17 years old, doesn’t even have a driver’s license yet, and he just underwent a liver transplant. He was nervously preparing to walk his first half marathon.
My biggest wish is that when he showed up at that first meeting and saw me running, that I gave him just a little bit of hope. That I helped him see that yes, he can be more than okay again.