Written by: Rhonda Fenske, Liver Transplant Recipient
I have a friend and his name is Jesus Christ. He is my Lord and Savior, and He is with me everywhere I go. He knows my every thought, need, and concern; moreover, He is my guiding light that leads my life. Sometimes, I have to wait for his answers, and sometimes, I am unsure of what His answers will be. However, He always knows what’s best for my life.
On May 1, 1971, I was diagnosed with a rare cholestatic liver disease called Alagille Syndrome. At that time, there were only thirteen cases in the world. Still today, Alagille Syndrome is considered to be very rare. With this disease, I had severe itching, jaundice, prominent facial characteristics, stunted growth and it affected my entire body. All the specialists at Rainbow Baby’s and Children’s Hospital in Cleveland Ohio addressed the medical issues as they occurred. However, my parents were told that I would likely not live to see up to or around 3 years of age. While the Lord knew His plans for my life, I had to wait for His answer. Living with Alagille Syndrome was never easy. I spent many months in and out of the Rainbow Babies And Children’s Hospital having to go through many surgeries. My parents spent many days and nights helping me deal with severe itching and scratching all over my body and to deal with the fatigue resulting from this disease. Taking short naps in grade school, was not an uncommon event for me and as I got older, my liver disease progressed. My eyes became more yellow, and my skin had a golden appearance as if I had a tan with very dry skin.
At the time, my family and I were attending West Ridge Baptist Church (Amherst, Ohio) when, at age 10 during a Sunday morning altar call, I felt something tugging at my heart. I knew God loved me and cared for me and that He would take care of me and my illness. I also knew He died on the cross for my sins and salvation so that I may have eternal life. I told my mom wanted to go down to the altar and pray to accept Jesus Christ into my life. What a day of victory that was for me! I received a friend named Jesus Christ. The following Sunday, I was Baptized to outwardly profess my faith in Christ to everyone!
The Lord let me live to age 35, but my rare congenital liver disease still kept getting worse and liver transplantation had to be kept in mind. During the liver transplant evaluation, I was told I needed a pediatric donor’s liver that was compatible with B or O blood type. I was also informed that a pediatric liver would go to a child first, then if there was no other pediatric need I would receive a transplant! So, the chances of getting a liver were very slim. A living donor option also needed to be kept in mind. Through prayer, I continued to keep my faith in Christ and His provision. Just as in 2 Corinthians 5 v 7 ( KJV ) states “For we walk by faith, not by sight.”. My mom and I prayed together as we walked for miles at a local walking track. The waiting time seemed like an eternity without knowing if I would receive a liver or go home to be with the Lord. I wanted His will to be done for my life and not my own, just as in Isaiah 40 v 31 ( KJV ) says, “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk, and not faint.”
On Good Friday of 2006, I was accepted on the liver transplantation list. July 11th, I received a phone call at 8 pm indicating there was a potential liver donor, and on July 12th, the next morning, I had the liver transplant at The Cleveland Clinic in Cleveland, Ohio. The night before the surgery, the nurses asked if I wanted something to help me rest, but I said no! God is in control and I felt calm and knew I would be able to rest.
The next morning in the surgical room, I asked if I could pray before I went to sleep. It was AMAZING when everyone stopped what they were doing and laid their hands on me. I prayed: “Lord, thank you for my gift I will receive. Thank you for my little donor, and Lord, I lift up my donor family to you for peace and comfort during this time of loss of their child, and I lift up each and everyone in this room to You, Father. If there’s anything laying on their hearts this morning, Father, I lift that up to you as well. Father, wrap your arms around us. Give the surgeons, nurses and anesthesiologist wisdom and knowledge. Father, you are the Great Surgeon, guide their hands as your instruments and you are in control of all things. In Jesus name, we pray - Amen.” I was truly blessed with a wonderful experience after the transplant. Furthermore, I was only in the hospital for one week, and during that week, the ventilator was removed early in the morning in the transplant ICU the next morning after the surgery.
Two weeks later, my lead liver transplant surgeon, Dr. Charles Miller, explained to that my own liver had two malignant tumors, one at 3 cm and the other at 6 cm, both were localized on my liver; and he further explained that had the tumors shown on the cancer screenings while on the transplant waiting list, I would’ve been taken off the list! I was very thankful that, because of where the tumors were located, he was able to remove the tumors along with my diseased liver in its entirety and replaced it with a healthy, viable donor liver that was a match for what I needed. Dr. Miller went on to say that my own liver was shriveled, had no biliary ducts and the liver transplant team did not know how I was functioning prior to the transplant; but I knew my strength came from the Lord.
I am now 10 years post liver transplant and 10 years liver cancer (HCC – Hepatocellular Carcinoma) free and am doing exceptionally well. Praise God! The severe itching is gone, my skin tone is normal in color with a beautiful, healthy glow and I have a greatly increased energy level and, for the first time in my life, knows what it’s like to feel normal.
I am very grateful for my donor and the child’s family for one of the most precious gifts I have ever received. I am very grateful for having found a friend in Jesus Christ and for my faith and trust in His guidance of my life. Sometimes, I don’t always understand why things happen in my life and I am unsure of what His answers will be. However, Philippians 4 vs 4-7 ( KJV ) states “Rejoice in the Lord always: and again I say Rejoice. Let your moderation be known unto all men. The Lord is at hand. Be careful for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.”
Since then, I (along with my husband) have been actively serving in my local church and have a heart for serving others through mission work. Because of the profound love of Christ and the GREAT generosity of my liver donor’s family, I no longer suffer from the rare cholestatic liver disease called Alagille Syndrome. I now feel a greater sense of normalcy in my life.
It is an utmost honor for me to share my personal story with others who are on the transplant waiting list for an organ, eye, or tissue and I pray that my story will bring a sense of hope to those who are waiting.