When I was asked to write “My Story” I quickly realized this story belongs to more than just me. My family was there for every moment: my parents, my husband Larry and our kids, our son Matthew and his girlfriend Aalayah whom I love as if she were my daughter. I could not have survived without each of them.
Our transplant story begins like so many others. I felt fine! We didn’t have the best diet and we didn’t exercise as much as we should. But it could be worse. So you can imagine my annual bloodwork results stunned us. Apparently a lot of things had changed since my last tests. I was sent to a gastroenterologist and diagnosed with non-alcoholic steatohepatitis (NASH). There were no physical symptoms. Fast forward a few years, I developed a very large (soccer ball sized) benign tumor on one of my ovaries. In the fall of 2018 I had no choice but to have it and my ovaries removed. My already sick liver did not handle this surgery well.
The physical stress of the surgery and medications caused my cirrhosis to worsen. Over the next three and half years my liver disease began to progress at warp speed. My entire body began to itch incessantly; with no relief and the fatigue was brutal. The last few months before my transplant, I slept 18 out of 24 hours. My spleen was enlarged which caused extreme anemia and I had to have iron infusions. Most people did not understand the severity of my illness because in the beginning I didn’t look sick. My family was my strength.
Then I began to develop ascites in my abdomen. The fluid retention was so bad I couldn’t eat or breathe normally. I took large doses of diuretics and had to waddle to the restroom frequently. Still I had to have my fluid removed by paracentesis. In the beginning it was monthly but toward the end it was every 10 days. I would gain and lose up to 22 pounds in fluid every 10 days. I wore maternity clothes and was asked more than once when the baby was due. I made some really great friends with the medical staff at Baptist East Hospital and still talk to them often.
I developed esophageal varices which required endoscopies every few months to inspect and band any that seemed at risk for bleeding. Once I was hospitalized for five days when the varices started bleeding and I began passing so much blood transfusions were required. It was during one of my endoscopies that I first heard the terms “end stage liver disease” and “MELD Score”; words that would define my status from that point. Larry, Matthew and Aalayah kept me going.
We were referred to the UK Health Care Transplant Center in the fall of 2021. How did this happen? I felt fine a few years ago. Now, I was told I would die without a transplant. Tests, lab work and medical appointments filled our calendar. Larry missed so much work. UK determined that I met the criteria for a transplant and the period of fear, hope, dread, and questions began. Every piece of information we learned led to more questions. How long would I be in the hospital? How long would my recovery take? How long would Larry have to miss work? In the world of Covid would I be allowed to see my family? Would we need to relocate closer to the hospital? I struggled with the idea that in order for me to live someone must die. It was difficult for me to accept that death was unavoidable. Although we are listed as an organ donors, I could not comprehend someone would make that choice and save my life. I spent many nights praying and talking to God about my concerns. It never became easy.
My health continued to worsen. I developed a dangerously low red blood cell count. I was told I was toward the top of the wait list due to my high MELD score. We packed our hospital bag. This was a time filled with hoping, dreading and pretending everything was normal. Our wait lasted three weeks.
“The Call” came at 8:54 AM on Friday May 13, 2022. I was second in line for the donated liver. Larry made record time from Shepherdsville to Lexington. The drive went by in a blur. I spent the time calling my family and friends. I warned them the transplant may not happen because I was second on the list. When we walked into the hospital we found out the other person had taken a medication that was contraindicated for the surgery. I was getting my transplant in a few hours. I pray the person ahead of me got a successful transplant soon after.
I woke up the next morning in ICU with Larry by my side. I won’t lie; this was hardest thing I have done in my life to this point. There were numerous IV’s and tubes coming out of my body! But each day a few were removed. First, I sat on the edge of the bed, then I walked with a walker and then I took the most glorious shower. The itching was gone immediately with sweet relief. The fluid was gone with just a little swelling. No more maternity clothes for me. My blood clots left my body with the old liver. My surgeon said my liver numbers were amazing from the moment I received it. The staff at UK Hospital was amazing. Larry never left my side. We went home after 7 days.
In the months before the transplant we had arranged our home for my recovery. We immediately realized our home was not prepared for someone with my physical restrictions. My bed was too high for me to get in and out. Our couch and chairs, although overstuffed and comfy, could not support me. The incision went from one side of my ribcage to the other and then turned downward like a flipped “L” shape. My abdominal muscles were demolished and I couldn’t even support myself in a sitting position. Our toilet was too low! Ordinary moments you take for granted were impossible. Larry was and still is my rock. \
I worked hard on regaining my strength and learning to walk without assistance. I depended on Larry for literally everything. Imagine every personal moment throughout your day requiring someone’s assistance. Caring for me was a team effort. Aalayah went to the store, did laundry and meal prepped for us while Matthew ran all errands for us. My Mom and Dad called countless times a day to talk to me and encourage me. I was restricted to only seeing Larry and my kids. At the beginning of our story I said I could not have survived without them. I meant it.
I really missed seeing my Mom and Dad. So two weeks after the surgery Larry arranged to visit with them outside. It was a beautiful afternoon. My parents were so happy to see my strength returning and my healthy color and I cherish this memory. My Mom suffered a stroke and brain hemorrhage the following day. My health was fragile so I was not able to see her in the hospital. She died on June 2nd. I helped my Dad and my brother plan the arrangements over the phone. The funeral home set aside time for us to say our farewells before anyone else came to her visitation. I was in isolation and was separated during the funeral. Larry, Matthew and Aalayah were my life boat.
My recovery definitely slowed. It was hard to cope with the loss of my Mom and strong emotions caused by a major surgery. With the help of my family and friends I took it one day at a time. Someone in the hospital told me at three months post-transplant I would begin feeling more like myself. I focused on the date and they were right. My smile didn’t feel forced. I began feeling better, stronger and more independent. We began to carefully visit with friends and other family. There have been a few minor setbacks, but my incredible gift of a healthy liver continued work perfectly. Three months of physical therapy made me stronger than I had been in years.
The first anniversary of my transplant is in two weeks. I feel amazing. In the past I always had to say I can’t or I don’t feel well enough today. Now I am able to say. “Let me do that!” Every day holds possibilities for incredible adventures. My time is focused on my wonderful family, friends and our future. I will try to give back a fraction of the incredible life I have through volunteering with KODA.
A transplant affects so many people. I am here today because someone that I’ll never know chose to save a life with their gift. I cannot express the depth of gratitude I have to my donor family. I refer to my donor as my angel. I know my angel and my Mom watch over me every day. I am comforted knowing they are together.