Primary Sclerosing Cholangitis
It was July 4th, 2010 when I came home from The University of Cincinnati to be with my family for the weekend at the lake. I had been out the night before with my friends at a party, and woke up late that next morning not feeling well. It was a four-hour drive up, so I needed to get on the road. When I finally arrived, my parents knew there was something wrong with me. My skin and eyes were yellow (jaundiced), and I hadn’t noticed it because I was so rushed that morning. It was not long after I arrived that I started to have intense abdominal aches and pains. After lying in bed for two hours hoping that it would go away, I finally decided that it was time to go to the hospital.
The local hospital told me that I was passing a gallstone, and that my gallbladder needed to be removed. The hospital didn’t have the tools for the procedure, so I was put into an ambulance and transported to The University of Michigan Hospital. The stone and gallbladder were removed immediately, but the doctors did not want to release me yet because my blood work showed that my liver enzymes were elevated. After ten days in the hospital and an ERCP (a scope of the bile ducts), they diagnosed me with Primary Sclerosing Cholangitis. The ERCP showed that my bile ducts were narrowed and the bile was being blocked. When the bile flow is inhibited or blocked, the liver can be damaged (and it was) which leads to cirrhosis. The doctors told me that PSC is an autoimmune disease, and I have had it my entire life. They finished my “diagnosis” speech by telling me that PSC was also progressive, there was no cure, and I would eventually need a liver transplant to alter the resulting outcome of the disease (death).
I immediately stopped drinking, and for about five years I took a handful of meds every morning and waited until the transplant was needed. There were numerous ERCPs performed over that period of time to clear my bile ducts of buildup (think of it as a plumbing problem), and I dealt with symptoms like increased jaundice, itching, tiredness, lack of energy, and swelling of my legs and feet. I was feeling great(ish) for about four of those years, but towards the end, the disease really started to affect me. At the time, I was finishing up the school year as an educator at the Deep Portage Learning Center in Minnesota. So after the year was up, I decided to move back home to Toledo, OH. Around that same time, I needed to find a new liver specialist because of a change in insurance, so the Cleveland Clinic was the best “in-state” option for me. I went in for a three-day transplant evaluation, and the doctors told me that I was sick enough and would be placed on the donor recipient list. They also informed me that because of my age, I should look into finding a living donor. Knowing where the liver was coming from, and having the donor go through thorough testing, was beneficial for me because of my age and the hopefully long life I will live post-transplant.
My mother was evaluated, but her liver was not the right size and she was right at the allowable age threshold for a living donor. In a way, it was a relief because I didn’t want to put her through a surgery, even though she really wanted to. By then, my name was moving up the list as I was getting sicker. My doctors encouraged me to continue to look for another living donor and not wait for a cadaveric donor. My sister Jamie volunteered next, and ended up being a good match. Once that was determined, we scheduled the transplant for February 8th, 2016.
A week before our scheduled surgery date, I got a call from the Clinic telling me that there was a liver available for me from someone who recently passed away. My parents and I dropped everything, drove straight there, and got prepped for surgery. Jamie and my brother Ben drove straight from Cincinnati to be there for the surgery, and right after they arrived, I was informed that the evaluation of the donated liver showed it was not healthy enough for me. I had almost gotten away with not having to put my sister through the surgery! The mood in the room wasn’t the best after that, but at least we were fortunate enough to have a plan B. A living donor might not be an option for some.
That next week, there were hugs and tears all around the morning of the transplant. It was very emotional for me since the surgery had been a long time coming, and I knew Jamie was already under anesthesia in the room just across the hall from me. As they put me under, I was surrounded by my doctors who I knew and trusted, and Jamie’s transplant coordinator Donna who was with her before her surgery, was there for me and held my hand as I fell asleep. Thankfully, the two surgeries went really well and there were no complications. My sister was released within a week, and then readmitted for three days due to issues with her wound (she’s doing great now!). Unfortunately, I was in the hospital over a month due to biliary leaks (a slightly common problem with living donations) and infections. It was a trying time for all of us. Doctors had to open me back up two more times to repair the biliary connections. As a person, I try not to be stubborn, but my body had other plans. I was released 34 days after the initial surgery.
It’s been over a year now since the surgery. I’m back to work, able to enjoy my free time, and I have about one more year left until I get my master’s degree in Education from the University of Toledo. The life I am living now would not have been possible without the exceptional doctors, coordinators, nurses, and hospital staff at the Cleveland Clinic (shout-out to U of M as well), my friends, my family, and of course my sister Jamie. Not a day goes by without me thinking about what they did for me. I couldn’t be any luckier.
And for all of you who might read this and suffer from PSC or any other form of liver disease…stay strong. I know the life we live can be tough at times, and sometimes may even not seem worth the trouble, but you do have a future ahead of you that isn’t defined by your disease. I look forward to meeting so many of you at the Cleveland Liver Life Walk!
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