When I was in my 30s, I experienced severe pain in my right side. I was sent to the hospital, they did a series of tests and nothing was confirmed. Luckily, I worked for a medical group that included 3 gastroenterologists. One of which suggested a liver biopsy. He performed this and diagnosed me with a Fatty Liver.
This was around 1990. At that time, there wasn’t much done for a Fatty Liver, so I went on about living as if nothing was there. I continued to drink, eat a lot of the wrong foods, like McDonald’s, had a second child, and made no changes to my lifestyle.
In mid 2014, my stomach began to enlarge. I was to the point of wearing maternity clothes. My sister took me to her PCP and he immediately scheduled me for testing and a paracentesis. Following that, I was informed that I was in need of a liver transplant. Being in denial, I refused to schedule anything or realize that this could in fact be fatal.
I befriended a phone nurse who worked for my insurance company. She called regularly and always checked on me to see how I was doing. She was fully aware of my denial. After her constant reminders of what life holds for me and my children, I decided to visit UCMC. I had to wait for over 6 months to prove that I had indeed quit all alcohol intake and went through routine testing. I was able to start the transplant processing to try to get listed. In early 2015, I was finally listed for transplant. I waited impatiently. Since I lived alone, I would take a rubber band and fasten my cell phone to my hand so that I wouldn’t miss the call. Hepatic Encephalitis (HE) took it’s toll on me and by June of 2015, I was no longer allowed to work or drive. I lived alone! How was I supposed to live?
At this time, UCMC had monthly meetings for the liver transplant (pre and post) patients. This was my greatest salvation. I got to hear how everyone got through the process, who else was waiting, how everyone handled this new life, new diet, etc. It was a very bonding experience. Any time someone was called in, it was a great celebration, especially when they came back afterwards to see us all again.
I had many rough times living alone. My HE would take the best of me and I would have no idea if I passed out or just had a “session”. I found out that if I drank OJ as my first symptoms appeared, that I was able to control them better and keep consciousness. I had a dog and we walked a lot for exercise. SHIPT had just started up locally, so I was able to get groceries delivered. That was fantastic. I got rides to UC from some post transplant patients who lived near me on the west side. Uber had just started up but was only in downtown or the airport area, so rides were only if I could find someone not working.
This WAITING lasted 1,030 days from the day I received my “listed” letter. This was the longest part of my life. I never wanted anyone to go through that like I had. Being alone, for so long, was devastating. I vowed to do whatever I had to do help others to never go through what I had.
December 4, 2018, my sisters and I visited Santa at the Union Center. We were about the only ones there. I sat on Santa’s lap, but told him there was nothing he could do to help. I already knew this would be my last Christmas, if I made it that long. My health was about shot. Santa gave me this little bell and told me it was good luck. It made such a beautiful sound.
Ironically, 2 days later, December 6, 2018, I received THE CALL. Travis phoned me to see if I could get to UC, there was a possible liver for me. It had been so long that all 3 of my caretakers were busy and I couldn’t find a ride to the hospital. Almost 2 hours later, I finally got a ride and a liver.
As soon as I was able, I was back at UC for the monthly liver meetings. I had finally joined the POST transplant group.
2 years later, COVID hit. There were no longer any meetings, no support, no fellow friends to discuss the pro and con of this life changes, pre and post care.
UC was very hesitant to have immunosuppressed patients meeting. SO, as soon as life changed and people could get out, a group of us started to meet ourselves. We met at the mall and then on Zoom each month. We called ourselves the Transplant Community. We did have gatherings each holiday, a picnic each summer and now we have a golf outing and soon a walk. We are all self-funded and all volunteers.
Tracy Keating lives in Liberty Township, Ohio.
