The Waiting Game
The diagnosis of End Stage Liver Disease was made in June 2005. I still felt fairly healthy, even though I had been abusing alcohol. One of the surgeons at CPMC described what I would be going through during the course of the illness. At first I laughed it off, thinking that I could beat it, just like every other obstacle that I had overcome in my life. Still, they wanted to conduct a full assessment to see if I qualified to be on a transplant list. That included two to three days of tests, meetings with doctors, dieticians, the finance department and even a psychiatrist. I was given a MELD score of around 27. What an eye opener! The range is from 6, which isn’t so ill, to 40, which is very, very ill. The MELD cutoff for getting a transplant is 25. (The MELD score is calculated mainly from lab results measuring the liver’s ability to produce clotting factors for the blood and to effectively excrete bile, and a measure of kidney function.)
In order to get on and stay on the transplant list I had to comply with the orders and protocol set by the transplant team. The first thing was in regard to alcohol consumption. Although I had quit drinking, I was required to attend Alcoholics Anonymous.
At first I was very compliant with the team’s conditions. But then I slacked off. It is very important to remain compliant with the medical protocol. For example, I didn’t realize I had to continue attending AA meetings for longer than 3 months, and since I had stopped drinking with no problem, I stopped going to them. I was removed from the transplant list as a result. I had to start the whole process over, and get documentation of attendance at the AA meetings. And by the end of the first year I wasn’t feeling so well. My health was declining.
The second year was still not that bad, but some hospitalizations caused me to start paying attention. I still thought I could beat this on my own, but it wasn’t working. I was still on the list, but because of the medications I was taking, my lab results were better. My MELD score was going down, even though I felt I was getting worse! I was starting to have episodes of encephalopathy (a brain condition caused by a buildup of ammonia in my system that my liver was unable to take care of) and found myself being hospitalized more. I was having routine lab tests and doctor visits. They treated my symptoms, then sent me home.
The third year I was hoping to get worse so I would be considered more seriously for a transplant. That was not happening and I started to think that I would end up dying before I would ever get a transplant. I was taking Lactulose for the encephalopathy. Lactulose causes soft or runny and frequent bowel movements. I was taking so much that I was hesitant to go anywhere in public for fear of having an embarrassing accident. I had also developed diabetes, partly because of some of the medications I was taking.
The fourth year was indescribably horrible. I was hospitalized 16 or 17 times within an 8 month period. I felt awful and was having a great deal of trouble carrying on day to day activities, burdening all of my support network with caretaking responsibilities. In addition, I was not feeling too good about life in general. With the help of my sister (an RN) I even started looking for other transplant hospitals as far away as Jacksonville, Florida. But I wanted to remain with the team at CPMC. The transplant team at CPMC appealed to the UNOS Board on my behalf. They wanted to raise my MELD score on the basis of the number of hospitalizations. Finally after 3 tries my score was finally raised, back up to 25, the cutoff for getting a transplant.
Now the serious waiting started. I was high on the list, but my phone wasn't ringing off the hook. I was getting more and more frustrated, while the routine lab tests and clinic visits continued. By September 2008 I was doubtful that I would even be able to attend my only son’s wedding in Hawaii. I went anyway, but it was a very difficult trip. While in Hawaii I had some blood sugar problems. When I returned home after the wedding I was greeted with the best phone call ever! It was the transplant coordinator from CPMC and I was the secondary recipient for a donor offer. They told me to go home and not to eat anything until I heard from them again. I was flying high and on top of the world, only to be let down when the primary recipient accepted the offer.
Now I was really down in the dumps, but I thought that maybe I would get another call in a couple of days. That didn't happen though, and I thought that I was destined to feel terrible for the rest of what looked to be a very short life. Finally, when I least expected it, I received another call from the transplant coordinator on Friday night, November 21, 2008. I was told not to eat anything and to get to the hospital as soon as possible. I started making calls to support people to get a ride to the hospital. Soon I was on my way to a new life and feeling better than I had in a long, long time. My recovery has gone very smoothly, and I feel great!
I needed to share this experience with people that are in the same situation that I was. It was worth the wait to have the excellent care I received at CPMC, but I would do whatever I could to spare another person from having to go through any of what I went through.
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