ESLDNeen,
I am so sorry you are having to go through this. Believe it or not, I can sympathize somewhat. I have been a chronic pain patient for over six years, and have developed liver disease in the last seven months. I have been wanting to go over to the hepatitis forum, to ask some questions...just haven't worked up to it yet. I usualy just read other people's topics, but I felt like maybe you would feel less lonely to know someone is having the same horrible issues. So, here's a bit about me. I am 29 years old, was in medical school until I had to quit due mostly to having had really bad Lupus for the last eight years, {been sick longer, but that's when I became disabled by it, and had to quit working}, and it has led to many other diseases and problems {Gastroparesis, Addison's disease, Loin Pain Hematuria Syndrome, Antithrobin III Deficiency {blood clotting disorder that has led to multiple DVT blood clots this year}..to name a few. While I found out a few years ago that I had Fatty Liver Infiltrates, {because of chronic steroids probably} I didn't think it would actually turn into anything big. Well, I was wrong. In may, just after I got out of the hospital from ten days of Heparin treatment for serious blood clots, I developed bad Ascites. This happened over night! Two days later, the severe pain in the upper Right quadrant of my abdomen began. Then, the same on the left. Many other symptoms have occured..along with encepholopathy {mostly mild, but have had some very creepy episodes}, the pain is awful, and like you keeps me awake pretty much all the time. I only sleep in the day {in part to encepholapathy}, and NEVER sleep more than four hours per 24 hour period. I'm lucky when even that happens. To make a huge story short, the fatty liver situation looks as though I have developed Cirrhosis from it, and what's worse, no one will treat the serious problems {like getting a paracentesis for all the abdominal fluid}, because they don't want to be the ones to deal with it, and take responsibility. A lot of them are scared because I have so many other serious health situations, and a bad history with my health. I have waited over six months to see a leading Hepatologist at Ohio State University, and will see him at the end of January, and I hope he will help. Anyway, the pain is awful. For me, I have severe pain in the bottom of the ribcage area on both sides that rotates all the way to my back, and around my side, and it is very swollen, and covers my entire ribcage {wearing a bra is an awful experience, and I don't wear one unless I have to go somewhere). Have since found out by the CT Scan, that it is because my liver and spleen are very enlarged {Hepatosplenomegally}. I will not go on and on anymore, but just wanted to know that I sympathize completely. It is awful, and am so sorry you have to go through that pain. Does your doctor think you are able to take pain medication? Judging by your handle, it seems like you are in end stage liver disease. {ESLDneen}. Is that true? I am so sorry if it is. If you aren't taking pain meds, I would think {depending on symptoms, and how bad your condition is} that even though pain meds filter through the liver, that it would be okay to have you on something as long as it does not have Acetiminophen {tylenol} in it. At that point, it is like almost every other medication {with the exception of blood thinners, and cholesterol meds..which are very hard on the liver} and not really any worse for you, not to mention, you need to have some quality of life, and without pain management, its not going to happen if your in chronic pain. As far as my opinion goes, I feel that if I don't have the basic things I need providing comfort, and as good of a quality of life as I can get, it doesn't matter to me whether I live for a long time anyway. Luckily, I don't have doctor's giving me a hard time about pain meds, but if I ever do, that will be my point to make. For me, I'd rather live a short time, as comfortable as I can, than a long time in agony. Not saying it will come to that, but that's how I feel. Quality of life is SOOO important.
I'd like to hear more from you, so feel to either email me, or post here if you like. Once again, I'm sorry you have to go through this.
Take Care, and Happy Holidays,
~Heidi