Liver Failure and My Day to Day Life

If you know me, but did not know that I have fatal liver cirrhosis then you know now. It is extremely difficult during the cold weather months for me. My blood being thinner actually goes through my body faster during the winter. With the more blood flow there is also the need to filter that blood more. My liver cannot do that normally in the heat of summer, so it is even more difficult in the winter. My spleen, and kidneys work much harder now. I still have a serious problem with a build up of ammonia in my blood. I also have to watch my diet very closely, and I start every day with 3 different prescriptions. I also take milk thistle, a strong daily vitamin and cannot take any type of pain killer like Advil, etc.

With the increased ammonia in my blood come two very serious conditions. The first condition is that my memory is not that good. I may repeat myself three or four times within an hour, or may forget when I am supposed to be somewhere. I now have to use notes for everything, and also have a program that fills in my information on any item that I need to fill out on line. The other side affect is that of having serious fluctuations in my personality. I may be very happy one moment, and then very grumpy and intolerant of things the next minute. As can be expected this causes serious consequences if I do not try to curb this as much as possible.

Other side effects are as follows. I have chills and have the heat usually around 80. Anything lower and I shiver like I am freezing to death. I have the beginnings of Parkinson disease. It will not become fully developed, but the uncontrollable muscle spasms do occur. I have very irregular sleep patterns and many days after being up 4 or 5 hours, I am completely worn out and need to take a nap for a while. My energy level is almost non-existent. I have weight fluctuations according to the amount of fluids that my body cannot get rid of. These fluctuations can be as much as 20 pounds in a 1 month period. I have some small liver spider veins due to blood vessels that burst without any special reason. I also can and do bruise easier than I ever did. Other effects include skin discoloration on my legs and extremely dry skin.

My meld score is currently 13. It has been as low as 9 and as high as 19. At 20 I would be on an IV drip and in a wheel chair. Usually at 21 you need to have oxygen as well. The number of actual liver transplants compared to actual waiting recipients is 10 to 1. That makes the prognosis not that good. I am completely disabled according to the state of Maine.

Every other month I have to go to my local internal medicine doctor or to Lahey clinic in Massachusetts. My three prescriptions cost in excess of 900.00 monthly with one costing 695.00 alone. I hope that answers some of the questions that people may have concerning my illness.

Yes, I can have a live donor, but they must meet a lot of requirements. It is not an easy process to go through for the donor, or the recipient. The donor will be out of work up to 13 weeks, and the Recipient can be unable to do anything up to 26 weeks, and then will be on anti-rejection meds the rest of their life.

That is my story. I hope it helps people to realize the need for organ donation, and the number of people who quietly suffer without people actually knowing their plights.