Primary Sclerosing Cholangitis

I was just a typical high school senior: in the top ten of my class, co-captain of the girls’ Varsity Volleyball team, working an after school job, spending time with friends, and above all, enjoying life. On a day in October, when I was supposed to be helping others, I never expected to be the one who would need help the most.

I was a member of the National Honor Society, and it was time for our annual American Red Cross Blood Drive. Being on the committee that sponsored these drives, I knew it was important for me to be a role model for the underclassmen and participate. The only thing holding me back was my fear of needles. After giving it a lot of thought, I finally signed the paperwork and became a blood donor for the first time. When it was all said and done, I was thrilled to know I would be saving a life! Little did I know that only a few weeks later, I would receive a letter in the mail telling me that my blood could not be used. They had detected “elevated liver enzymes” and encouraged me to be seen by my family doctor. What I thought would be just an afternoon at the doctor’s office turned into 4 months of lengthy and extensive testing. For someone who had been afraid of needles, the next few months would be no walk in the park.

After countless labs, many scans, and a seemingly endless amount of appointments, I was finally diagnosed with a progressive liver disease called autoimmune hepatitis. I lived with my health issues through a very important and busy time in my life. I achieved my bachelor’s and master’s degrees, got my first job, married the love of my life, and bought my first house with liver disease. It wasn’t until almost 10 years later though, that a more specific diagnosis was made. I had a combination of two major liver ailments. One was the autoimmune hepatitis, and the other, PSC (Primary Sclerosing Cholangitis). There was no cure, only a treatment plan to hopefully keep me stable. If this didn’t work, I would eventually lose my life.

Fast-forward another 5 to 6 years when the progression of this deadly disease really started to show. I began to experience side effects from the medicines that I was on, and my energy level was fading. I miscarried a baby girl and delivered two other children prematurely. My daughter didn’t survive, but my son, “my miracle” did. Today he is a fantastic 8 year old. The fast progression of my disease caused large veins to grow inside of my abdomen where they didn’t belong. I was in and out of hospitals, struggling to complete my daily activities, and missing out on life. I was a wife, mother, daughter, friend, and granddaughter who was trying so hard to fight, but was slowly losing the battle.

Being a person who loves life and enjoys being on the go, it was very difficult to come to terms with the fact that I couldn’t do what I used to. I was just too tired to be me. As much as I didn’t want it to, PSC defined who I was. Knowing that I needed a life-saving liver transplant was very surreal at times. Being listed at two hospitals showed the world just how dire my situation was. Numerous doctors told me that the best outcome for my situation would come by way of a living liver donor. As time went on and I became sicker, I realized that I was going to have to be more open about my situation and ask for the help of other people…something that was very hard for me to do.

It was just a few short months after sharing my story in 2015 with friends, family, colleagues, and the public, that my miracle arrived. A friend and coworker approached me on a normal January afternoon and graciously offered to give me part of her liver so that I would survive. Following months of testing and appointments, it was determined that my donor’s liver was a perfect match for my body. On July 6, 2015, at Cleveland Clinic Hospital, we underwent the surgery that would provide me with 62% of her liver and leave her with about 35%. It was a 4-5 hour procedure for my donor, but I was in the operating room for more than 10 hours. We both came out of surgery easily and my new liver began to work immediately! The nurses, doctors, and visitors that I had, kept telling me that I looked so healthy! The recovery process was very different for the two of us. My donor was released from the hospital after just five days, and I left after ten. On the sixth day post transplant, my liver experienced some mild rejection that was fixed very quickly. We were required to stay in the area to be monitored after surgery, and almost one month after transplant, we were both back home (small towns in Western New York), resting and doing what we could to get back into a normal routine.

Life after transplant has been very different, but wonderful. It has been a long road traveled to get to this point, and the journey is far from over. There will always be difficult days, but for the first time in my life I’m not worrying about my health. I’m getting my life back on track and I feel like I’m beginning to live life again. Things that I have done naturally throughout my life have such a new meaning and a new feeling. The best part of my life after transplant has been the knowledge of hope. In the face of liver disease, dealing with the frustrations of symptoms and the fear of the unknown, I believe that there is hope for everyone. Those of us that have been dealt these cards must cling to our hope. It is what keeps us fighting, it is what allows us to begin and end each day, and it is what allows us to look forward to the future with excitement and anticipation.

I have truly been blessed over this past year. While I have experienced pain and fear there has also been life and love. It is a very rare opportunity to get a second chance at a life, a second chance to do it all over again. I will forever be indebted to my donor and I am thankful every day for the opportunity to see her, talk to her, laugh with her, and live for her. She has given me a gift that is often unheard of and for that I call her my hero. A bond has been made for life.

Being chosen as the 2016 LIVEr Champion for the Cleveland area has been such an honor. It is my mission to spread the word about organ donation, to dispose of the many misconceptions that prevent life-saving opportunities from happening. I am truly humbled to be representing the liver disease community and the thousands of people who are waiting for their second chance.