Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 You are exactly right. I think most people have to see the illness or injury to realize one is ill or hurt. I guess we are all like that. Before I was diagnosed I thought I was lazy. What a relief when I found out it wasn't my fault at all, but what a bummer when I found out how serious it was! Thanks for the perk-up, Lynn in Wa. AIH Eileen Mcquillan wrote: > From: " Eileen Mcquillan " <E.Mcquillan@...> > > Dear Lyn > > I know how you feel, when I was in hospital and the colour of caramel > custard my family were genuinely concerned - and when I was at my lowest > supported me and made me stay in the Hospital until they'd finished testing > for every thing under the sun! > > As soon as I started my medication and the colour died down and I became a > pink person again, the totalerance began to waver. I get the impression > they think i'm wallowing in self pity and am just being lazy, I do get > frustrated, something simple like the ironing seems impossible right now - I > have good days and bad days - gradually more good than bad. I know I don't > know alot about AIH, but even what I try to explain seems to go in one ear > and out the other??? > > Oh well, one of these days i'm sure they'll get the message!!! Hang in > there!! > > Best Wishes > > Eileen AIH > 25/ UK > Re: [ ] Laparoscopy - J. > > > From: Lynn <CEN32195@...> > > > > Geri, I feel you are right about the meds and stuff. I think a person is > > better off taking meds if they work and holding off worse problems. I > also > > have found that people just don't understand that we don't feel all that > great > > most of us. I can make plans in the morning to do something and by the > > afternoon not feel well enough to do it. Friends and family have a hard > time > > with it. I feel they are trying but really don't have a clue. Like with > a > > cold or flu you get over it and it is done. This you don't. I am tired > of > > explaining it to people, but I guess I have to continue on! Lynn AIH > > > > Geri Spang wrote: > > > > > From: Geri Spang <spangs@...> > > > > > > , > > > I've been told that " fatty " liver is what becomes a cirrhotic liver. In > > > other words, the fat (the mind boggles, imagining what THAT looks like) > > > turns into scar tissue/i.e. cirrhosis. Leaping to unqualified > conclusions, > > > that would seem to me to mean that the biopsy was done pre-cirrhosis, > which > > > is good. Especially if they can stop the process now, or at least slow > it > > > down a lot. All of my ultrasounds, CT scans, etc., have shown fatty > liver > > > since before I had my liver biopsy and before I was diagnosed with AIH. > > > > > > When I was hospitalized due to complete stoppage of gallbladder and bile > > > duct functioning, my bilirubin was very high. However, there turned out > to > > > be nothing wrong with either of them. It was explained to me that > because > > > of poor liver function, the gallbladder and bile ducts were not able to > do > > > their jobs. Whatever they did in the hospital (and I wish I knew what > it > > > was) resulted in complete elimination of the excess fluids in my > abdomen > > > and the severe pedal edema I had at the time. My bilirubin has never > been > > > elevated again, in a year and a half. I was not, incidentally, ever > > > visibly jaundiced. I came out of the hospital almost 35 lbs. lighter > than > > > I was 5 days earlier. > > > > > > I was lucky because the doctor who hospitalized me put together a team > who > > > did all the right things, apparently. Instead of one doctor reaching > > > conclusions, there was mutual involvement in the diagnosis. First > > > diagnosis by a GI doctor was PBC (with a dire prediction that I had 2-5 > > > years to live, if I was lucky) but that was modified by two different > > > Hepatologists to AIH. I was evaluated for transplant but because I've > > > responded so well to the combination of Imuran and Prednisone, I'm now > in > > > almost complete remission. My labs are nearly normal except for GGTP, > > > which confirms that I do have cirrhosis, but there's no inflammation. > My > > > liver is still " fatty " according to an ultrasound a few months ago. > > > > > > In my case, I have no other complications. I now wonder if I'm the > > > exception rather than the rule since so many people who post here seem > to > > > have other autoimmune diseases. Also, the prognosis for AIH people is > not > > > always the same. Some don't respond well to the meds, some don't > respond > > > at all and others seem to spontaneously improve. This is basically what > my > > > Hepatologist told me recently. > > > > > > I know what I'd do in your situation, but each of us has to make our own > > > decisions. I'd go along with a treatment program of Imuran and > Prednisone, > > > assuming that's the plan. My doctors believe that it's better to start > on > > > lower dosages of Imuran and increase it if necessary rather than start > > > high. Also, the Hepatologist decreased the Prednisone that the GI > doctor > > > started me on, from 40 mgs. down to 30 mgs. and after the first signs of > > > positive response, dropped down to 20 mgs. where I stayed for several > > > months, then began a gradual decrease ( " gradual " is a VERY important > term > > > here!) down to 5 mgs. where apparently I'll stay forever, assuming > nothing > > > goes wrong. There seem to be several schools of thought on treatment > > > programs and dosages and I read somewhere that each has it's merits. > > > > > > My own opinion is that it's better to take the meds before it becomes a > > > life or death situation rather than not take them then later try to undo > > > damage that can never really be undone. > > > > > > Above all, you have to have doctors you can trust. I grit my teeth when > I > > > say that because sometimes it's not so easy to like the doctors who are > > > most qualified to treat you. And, bear in mind that none of us are > medical > > > professionals (Hepatologists) so all we can offer is a wealth of > experience > > > but no real medical expertise to back up what we've concluded. > > > > > > Off my soapbox mode - how do you feel, besides scared half to death? > The > > > darned meds will keep you feeling lousy for a long time, but when I feel > > > discouraged about that (I never really feel normal and healthy anymore) > I > > > remember how very sick I was without the meds. The price we pay to stay > > > alive is worth it, but it takes some powerful will to live and attitude > > > adjustments! > > > > > > Hope you are okay. What's the next step, or did they say yet? > > > > > > Take care, > > > Geri > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2002 Report Share Posted September 26, 2002 Eileen why did you have a revision. I am post op 9-4-02 and scared my stomach will stretch. Please explain about revisions. After spending all that money I am scared the surgery won't work for me. Was your original surgery a different type? I was over 300 pounds and I am wondering if I will need to get my stomach made smaller to get to a reasonable goal weight. You can e mail at msmarj2@... Thank You Marge Hitchcock, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 You know how it is though, I'd kill for 16 degrees right now! Prue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 > > You know how it is though, I'd kill for 16 degrees right now! > Prue > > Yeah,lol We humans are SUCH a contrary species are'nt we,Would love to swap a week with you. Mind you the views here are nothing short of spectacular and being an expatriate pom I love the 4 seasons. Not that W.A is without it's own stark beauty ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Thank you Eileen, I will order and try! Cherie Quote Link to comment Share on other sites More sharing options...
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