If you are reading this because you love someone who is need of a liver transplant, I have written this with little details of the progression of the illness, steps that I had to take to become a living donor and some of the “after” effects. I chose to not overly focus on my feelings and emotions during this time because if you are reading this then you know these feelings. If you are considering becoming a living donor for someone; please know you are not alone. There are a growing number of us “livergivers” and we are here to help however we can.
June 10, 2006 my brother Anthony hasn’t been feeling well and today the doctor told him his liver function tests were abnormal. After numerous tests and a few brief hospital stays the doctors at Roger Williams Medical Center stated that he was in end stage liver disease brought on by the Hepatitis C virus and there wasn’t anymore they could really do for him, time was limited. My Mom would not accept that and arranged for a second opinion in Boston at Beth Israel Deaconess Hospital on Sept 11, 2006. The result of that visit led to the eventual listing of Anthony on the transplant list.
October 2006 I approached Anthony and my parents about the possibility of the adult living donor transplant programs that I had been researching in New England. Immediately my brother said "No". He refused to put me at any risk as a result of his disease and my parents agreed. This frustrated me greatly because nobody would even look at the information I was trying to provide or talk about the possibility in the future.
Anthony continued to get sicker resulting in numerous hospitalizations. He encountered many infections, ascites, seizures, and as time passed the ammonia levels in his brain caused so much confusion that the Anthony I know and love wasn’t able to interact with us most of the time. He was wasting away before our eyes. Mom & Dad did everything to try to get nutrition into him and their lives revolved around caring for their 39 year old son. As a parent myself I discovered a whole different respect for my parents. They pulled together and selflessly attended to Anthony’s every need.
From the time he was listed only one call was received about a potential donor on March 17, 2007 during a snowstorm and unfortunately that didn’t work out. I again offered and was shot down about the living donor transplant program. I felt that this was God’s plan for us but nobody else was ready to accept that possibility.
July 30, 2007 my brother has agreed to explore the living donor program at Lahey Clinic in Burlington, MA!! Mom called to have his records sent from BI for review to determine if he is a candidate for the program. August 15, 2007 Anthony has been accepted as a candidate!
Mom & I are going for preliminary labs and blood typing to determine if either of us are potential candidates for donation. Mom has an incompatible blood type but mine is compatible. October 6, 2007 my CT scan showed that I have enough volume to donate to Anthony! Next step is a consult with surgeon, physical, more labs, chest x-ray, social worker, psychiatrist and financial counselor. All tests and appointments were passed and surgery has been scheduled for November 19, 2007. Finally a light at the end of the tunnel!
November 19, 2007- new life begins. Anthony and I went into surgery at 8:00 a.m. About 9 hours later my brother had 58% of my liver. He went back into surgery the next morning so that Dr. Pomposelli could finish a few connections and look at how the liver was beginning to function.
The nurses had me out of bed and in a chair later in the day on November 19th and the following day I began to walk around in the halls- just a few yards at first but by the end of the day we were walking short halls. My pain was managed fairly well and each day they removed an IV, a line, the epidural, the foley catheter and the drain that extended out of my liver to a bulb outside my abdominal area. Dr Pomfret said I went through surgery wonderfully and was progressing according to schedule. I didn’t have much of an appetite in the hospital due to nausea but the day I came home I ate 2 McDonald’s cheeseburgers and an order of fries! I stopped taking pain medication during the day when I came home and about 3 nights later stopped taking the narcotics altogether.
I will honestly say that I felt great and then 1 week after coming home I spiked a fever and felt like my insides were ripping open. Surprise, surprise the CT scan showed that my bowels were slowly functioning and that all the pain was from an entirely "backed up" digestive system. That was the worst pain of the whole experience and once that got rectified I started feeling better and stronger each day.
Anthony was so ill having declined rapidly in the 2 months preceding surgery that he stayed intubated and sedated in the PACU for one week. He got moved to the liver floor the day I was discharged.
His recovery time has been much slower and he has experienced problems with vomiting, infection, hallucinations- mainly from the steroids and anti-rejection medications- but also in part due to the graft trying to do it’s job and survive being so small in such a sick body. I write this December 18, 2007 and although my brother remains hospitalized, he is with us and he is healing. The surgeons and doctors at Lahey have assured my family that the liver is functioning and slowly growing, that his labs are improving daily and that he is on his way.
Although we are not out of the woods yet, Anthony’s eyes are bright white and his skin is no longer jaundiced. He looked healthier in that respect about 48 hours after surgery. It is incredible that a little more than ½ an organ is able to do that in such a short time.
I never had a thought of "maybe I shouldn’t do this or why am I taking this chance". There are risks with everything and this is one I was prepared to take. I put it in God’s hands and he kept us both safe as I knew he would. Living organ donation may not be for everyone and that is fine but for those of us who it is for- I attest that there is no greater feeling in the world than to see the whites of a loved one’s eyes and know that you have given that person and the entire family a new beginning.
I will venture to say that this experience has changed me in little ways. I discovered we have a circle of support that is far reaching. I learned that God is present in more people’s lives than we realize and that people ARE compassionate, caring and willing to help. The best I can say is that Christmas holds an entirely different meaning for me now and I pray that the way I feel today stays with me for the rest of my life!!
August 13, 2008. Anthony passed from our hands to the Lords. He fought very hard to gain strength and recover to enjoy his “new liver” but it was not meant to be. Anthony’s family is forever grateful for the opportunity afforded to him by the living transplant program and continue to be active in promoting and educating the public about organ donation and living donor transplantation. We as a family will continue in memory and honor of Anthony’s name.