Our Journey to and through Transplant
Back in 1998 it became clear that my father was going to suffer for a number of years and die, from the deteriorating effects of cryptogenic cirrhosis of the liver. Wanting to shorten his suffering, improve his chances of survival, and keep him around for his grandchildren, I offered to become his living donor. For three months, my wife and I prayed constantly, consulted with others and discussed whether I, the father of a young family, should give a portion of my liver to my father. I was 38 years old at the time. We had two daughters five and two years old, and our third child had just been born that year. I was 5’ 11” 165 lbs. I didn’t exercise regularly, but was active and in good health.
The Decision to Donate:
Even though my wife was against my decision to donate, I knew that it would be awfully hard for me to live with myself, if I did not at least try to save my father’s life. I felt it was my personal mission to take the “reasonable risk” to extend my father’s life. The resulting extended marital tension, however, was probably the most difficult aspect of the whole transplant ordeal. Later we found out that many marriages of both recipients and donors do not survive the transplant experience.
One thing my wife asked me to do during our decision process was write a letter for my children in case of my death, so she would not have to explain my motivations, but I would communicate them in my own words. The exercise was good for me to understand my wife more. I told them how much I loved them, and that I didn’t love my own father more than them, or that I risked myself out of a lack of love for them. I wanted them to know that I did this for them, because I wanted them to know their grandfather, who was such an amazing man! I was able to express some of these things to my oldest daughter, who had turned 6 years old by that time.
Because of my father’s condition and the complexity of the procedure, we were referred from one hospital to another, and then to a third – Mt. Sinai in New York, one of the most experienced with this procedure. The date for the operation was finally set (June 18, 2000), on my parents’ 40th anniversary!
The Transplant Procedure & Post-Op:
On the day of the operation, I had to lay in “pre-op” for three hours, while they removed my Dad’s liver. Finally, I was the last patient, left alone in the huge “pre-op” room. I prayed, but my soul felt numb. I knew that at any moment the door could open and someone would tell me one of the following, either
- “Your father did not survive the operation, you’re free to go,” or
- “I’m sorry, we found that the cancer had spread; we can’t do anything more to help him,” or
- “Everything’s gone fine so far. Your father’s ready. It’s time for you to go.”
To be honest, I really didn’t know which of those options I wanted to hear, and tried not to want anything. God would either be pleased to spare my father of all the sufferings of this life, or He may choose to save me from this operation, and give us our father for another few years while he battles the cancer. And if God would be glorified by this transplant, even if that is in some way that I’ll never know in this life, then may His will be done. Finally, the doctor came in and said, “Your father’s ready; let’s go.” I didn’t even answer him, but said, “Lord, here am I.”
After the operation, I suffered from a heightened reaction to the general anesthesia, such that I only really “came to” two days later. I remember my first conscious thought was, “Oh, this hurts, that means I made it and I’m alive!” But I never heard (or remembered) my wife’s words of celebration and encouragement in ICU, which became an issue later. During an x-ray taken in my hospital bed the epidural fell out, so I went through a few days of full, post-op pain. Then every form of pain medication they gave me made me violently nauseous. My wife was not able to handle seeing me in that state, and still had a nursing child, so my brother was my heroic bedside helper, also helping me to take the walks needed to get my bowels going. Nausea itself can be bad enough, but especially so when all the muscles of your stomach have been cut open and 47 staples are holding it all together. After the fifth day of nausea, I decided to try going off all pain medication. By the end of the day, the nausea was simply gone. The dull pain of the incisions ended up being easier for me to handle than the narcotics.
While the transplant had been successful for my father, but the very next day the sutures on an artery burst, and he was rushed into the O.R. During the operation an excess of fluid built up in his body, and especially in his lungs. They took him to the Intensive Care Unit, where he was put on a respirator and remained under general anesthesia in an induced coma. Although the doctors were confident that he would recover, he lay like that for three solid weeks!
The Challenges of Recovery:
I was released after eight days in the hospital, but stayed in New York City for observation and to keep my mother company at Mt. Sinai’s excellent TLC complex for donor families until my father’s condition improved. I was still unable to stand up straight at the time, and was often overcome with waves of abdominal pains, but they always subsided in an hour or so. I had had gas and only a single, small bowel movement in the hospital. But on the fifth day after my release, the pain did not pass, and I collapsed. My youngest brother and some friends who were thankfully visiting us at the time took me to the ER at Mt. Sinai. They gave me morphine, and as before it made me ill. I lay for two days in unbearable pain, while the doctors tried to figure out what was wrong. It turned out that I had a bowel adhesion, which had caused an obstruction of the bowels. Women often compare the pain of a bowel obstruction with the contractions of childbirth, but which never subside, but only keep getting stronger. As soon as they had diagnosed the problem, an intern inserted an NG tube into my stomach through my nose. The tube released some of the pressure that was building up in my stomach, and they hoped that the bowel would fix itself.
It was two more days of abdominal pains and dealing with the NG tube before a second operation was scheduled. Taking the contrasting fluid and then trying to lie flat for an MRI was excruciating. They decided to attempt the operation first with laparoscopy, but warned me that they may have to open me up again, if they run into difficulties. Immediately, after the procedure, I could sit up straight again. But my belly button has never been the same!
Soon after my second surgery, my father was brought up out of the anesthesia, and in the process suffered a seizure. Strong anti-seizure medicines clouded his mental capacities for months thereafter. My father endured yet another operation in August when one of the bile ducts connected to his new liver became blocked. He also fell a number of times during rehabilitation, and broke some vertebrae. During all of this, my mother fell into a clinical depression, and was not able to take care of herself, let alone Dad. The emotional and financial concerns had mounted, and as the medical situation became more uncertain and complicated, she was simply overwhelmed by the stress and strain. Even in my condition, I had to come to their home for a week to help them.
Three months after the transplant, the doctors informed me that the left lobe of my liver had regenerated to an acceptable mass, and that they no longer expected any kind of recurrence of the unusual bowel adhesion. At that point they said that I was the only donor who has experienced this complication. My liver grew back to its original mass after six months.
I will always have a big “Mercedes-Benz shaped” scar on my stomach, but it faded to normal skin color in a few years. Scar healing cream helped. For a long time the incision was painful to the touch, even though it was not infected. However, the skin surface of my lower abdomen below the incision has been numb to the touch ever since. For over two years after the transplant I had constant deep muscle abdominal discomfort, and my activity had its clear limits. It was very difficult to drive or ride in a car for long distances, especially on bumpy roads. It was painful for children to sit on my lap. For years I experienced periodic severe abdominal cramping episodes, which I could do nothing for but sleep off after their onset. They slowly subsided in length and frequency until they ceased about three years afterwards.
The Aftermath and Advice:
Six months after the transplant, my father died from complications, as his bones continued to disintegrate, even though his liver functions seemed normal. We had to decide whether my father would die from the pain or from heavy pain medicine. In the end, I literally buried a piece of myself with my father!
For years, my wife and I continued to struggle with the emotional, relational, and spiritual effects that this decision and these events had on us and on our children. Some still come up to this day. We have fought to avoid bitterness and have dealt with much confusion, uncertainty and loneliness. Most people who tried to listen to us, however, had absolutely no idea how to respond to this ordeal. The best response was just sit with us in silent empathy, or simply acknowledging how hard and painful all this has been. As we have shared our story, many have been touched by different aspects of our story, whether it was issues of liver disease or transplantation, of life and death and risk-taking, of weighing priorities and decision-making, caring for aging parents, or seeking God’s will. If you wish to contact us, please do so.
- The livingdonorsonline.org/general-information/ page has excellent information to review before you decide to be an organ donor.
- More information is better. Like the founder of this site, I was amazed how little information was out there, nor a database to compare previous donations like your own. I had no idea what “serious abdominal surgery” really meant. The Living Donor Buddies idea is fantastic!
- More communication is better. Beforehand, talk about all the options with all parties involved. Inform those close to you that you will probably not hear or remember anything in ICU, so keep the encouragement flowing throughout the recovery!
- Be prepared for the worst. Prepare mentally and spiritually for the outside possibility of your own death, and at least the possibility of serious unforeseen complications for yourself and the recipient.
- Get good outside support from a trusted, spiritual advisor. This only helped me afterwards, but would have been a great comfort along the way, with whom to process my issues with faith and God. Expect the “transplant ordeal” to be harder and more long-lasting on those around you (especially parents, spouses and children) than you would think. Encourage them to get needed support as well.
- Physical therapy. Go into the donation with as much “core fitness” as you can, and get advice how and when to appropriately build core fitness afterwards.