If you had asked me as a little girl, how my life would turn out, I am pretty sure that it would include none of the past 20 years and where I am standing today. It never crossed my mind that I might need and experience a life-saving transplant. I know all too well, that life isn’t the picture perfect plan that we imagine in our heads. It didn’t matter what I thought my life should be like, there were other plans in store for me.
I am the face of liver disease. I was diagnosed at a young age with Autoimmune Hepatitis and PSC or Primary Sclerosing Cholangitis. When I was first told that I was sick, it was overwhelming. But, like many other experiences in life, I took it as it came, dealt with the constant complications, and waited for the next shoe to drop. It was that pattern that allowed me to survive through many stages of my progressive disease. My health took a hit during a very important time in my life. I was working my way through college, creating a life with my husband, landing my first job, and starting a family. Many days, my disease was just plain unfair. I was tired of being fatigued, tired of having no energy, and tired of feeling like an outsider. Little by little, liver disease was making me a person that I didn’t want to be by slowly taking away my life. Still, I continued to fight.
As much as I fought, my disease proved to be much stronger than I ever thought I could be. In the fall of 2012, my health took a turn for the worse. My symptoms became increasingly worse and they were allowing my illness to define who I was. By the winter of 2013 I was added to the transplant list at Strong Memorial Hospital in Rochester. My best chance at receiving a liver was to find someone who was willing to be a living donor. My disease would progress so slowly, that by the time I would find a cadaver liver, I would be too sick for transplant. With time running out and my options running low, I slowly began to share my story, but only to those I could trust, my friends and family.
I was beginning to feel hopeless and uncertain of the future, when my miracle arrived. After having a casual conversation with a co-worker in the hallway on a Friday evening, something sparked her to do some research about living liver donation. A few weeks later, on what started out as a normal day in January, my faith in humanity was restored. My donor approached me after work and told me that she would like to pursue the possibility of giving me a portion of her liver. There are no words to explain what it feels like when your health is failing, and this gracious person who owes you nothing is willing to save your life.
Over the next five months, both she and I would endure extensive testing in both Cleveland and in our hometowns. I was not initially listed at Cleveland Clinic, but with her offer, they were very quick to get me tested and on the list. The road to our transplant was not an easy one, but it made it easier to know that we each had the other person to cheer us on and push us when we just felt like giving up. We also had such an overwhelming amount of support from our families, friends, co-workers, and acquaintances. On the morning of July 6, 2015, my donor and I were both wheeled into adjoining operating rooms where a bond would be created for life. After 10+ hours, we were both in recovery and doing well. It would only be four short weeks before both of us would be back home in our familiar hometowns and living life again.
Life after transplant has been an adjustment for both of us. There are days of struggle, but also days of celebration and feeling great. There is a chance that the disease that caused my transplant may reoccur someday, but for now I am enjoying each day. You see, my life may not have turned out like I had planned it to, but through my struggles, I have learned so much and grown as an individual. I can spend much more time, doing things with my family, things that I would miss before transplant because I was just too sick. I have a life-long bond with the greatest person I know, my hero. She has saved me in more ways than one and words will never be enough to let her know just how much she has done for me. I am thankful for the opportunity to wake up every day and talk to her.