Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Hi Betsy, Thanks for asking, yes I do feel better but am weak from so much fluid loss. I just need to replenish my fluids at this point. Must have been a bug. Yes I have cirrhosis (childs score A) as a result of AIH and alcohol use. Which came first " the chicken or the egg? " One will never know as I was misdagnosed and carried the AIH for approx 10+ years before I was treated appropriately. Even with the insertion of TIPS, which increases ones risk for encephalophathy I have NO problems with memory. I can remember phone #'s, Medical Record #'s, Credit Card #'s Drivers License #'s, Social Security #'s, PIN #'s and even those of my ex spouse from 14 years ago! My husband is amazed at how much info I retain, I even know bus schedules and can pull them from memory at a moments notice, and I'm not just talking about one route but several. My recent labs indicate that my amonia levels are well in the normal range and that enceph is not something I should be concerned with now. Getting listed for transplantation requires a variety of things. In my case, my lab values are keeping me away from being listed. As of last week... my labs returned with such posivite values that had not been seen in years. Normal Bili, Noraml PT, no amonia. LFT's and Platelets as expected. Seems that the prednisone is doing its job at putting my AIH in remission. Today I just deal with the side effects of the cirrhosis, and those are life threatening but not enough to list me. If I get transplanted, chances are it will be an emergency situation where they can't control the bleeding anymore. Otherwise my GI says my liver is good another 5-7 perhaps 10 years? If it weren't for the placement of my cirrhosis near and around the portal vein causing portal hyper tension I would be OK. My GI says that he has seem even end stage cirrhosis pts who NEVER bleed, and then folkz like me with the early stages of cirrhosis who bleed like crazy. It has everything to do with where the scarring is. Fatiuqe is something I deal with everyday. Some days are better then others. Although on disability, it is my hope that once I am transplanted that I can return to society as a productive member of the work force again, so I work part time to keep my resume in check. My legs and joints hurt the most, my heel spurs kill me at times, but I've never slept such a restful sleep then when I have worked at least a few hours a day. Working is better then any sleeping pill, and gives me a great sense of purpose. I still manage to get in a couple hours nap maybe 4 times a week. Sound like your Docs nurse is a real pain in the patootie and needs to go to some continuing credit courses for nursing on EMPATHY. What does cyclosporine do and what for again? thanks, Jen On Mon, 02 Jul 2001 07:18:14 -0000, wrote: > Hi Jen! > > I hope you are feeling better! It sounds like you have cirrhosis as > a result of the AIH. Do you have " memory fades " or fatigue as well > as the shunt problems? Has your doc suggested getting on the > transplant list? I was just wondering because I am getting a little > bummed out about how matter of fact my doctor's nurse is about my > fatigue and lack of ability to concentrate from the cirrhosis, but I > do not have varicles now. > > I don't know if I could take 3-4 more years of being this tired... > > I start cyclosporine tomorrow. Hopefully my liver will rally! > > Betsy San Diego AIH > > > > > > > > > > > I added Imuran to my list of meds three days ago. I had gone > off of > > it > > > > a > > > > year and a half ago because of it causing severe acne. Now > with the > > > > acne > > > > under control with tetracycline for 6 months. I started > imuran again > > > > (50mg) > > > > with blood work done once a week over the next month before > the > > > > predinose > > > > (10mg) is reduced. > > > > > > > > I AM SICKER THAN A DOG. I wonder if I just ate something > bad, have > > the > > > > flue > > > > or if this is a side effect of the Imuran. My whole body > aches, feels > > > > like > > > > arthritis in my knee when it rains but its in every joint. > I've been > > > > throwing up for about 8 hours and its seems to have finally > stopped. > > > > > > > > No blood in my vomit which is good. Ultra sound of the TIPS > shunt > > > > reveals > > > > possible occlusion or stenosis at the opening and I am > scheduled to > > > > see a > > > > radiologist next week for possible ballooning of the shunt, > or > > > > re-instertion. My velocity flows had changed a great deal > from my > > > > previous > > > > ultra sound. > > > > > > > > So, do I just have the 24 hour bug that seems to be going > around? Or > > > > is it > > > > possible that Imuran and my body just don't agree? I > expected body > > > > aches > > > > with the lowering of prednisone but I haven't even started > to taper > > it > > > > yet. > > > > > > > > Thanks, Jen :/ > > > > > > > > _______________________________________________________ > > > > Send a cool gift with your E-Card > > > > http://www.bluemountain.com/giftcenter/ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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