Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 , One thing you may want to share with your family...AIH is a chronic disease, not an acute one; there is treatment, not cure. One cannot expect to suddenly be " over " it. Unless one is able to go into remission and REMAIN in remission, treatment is lifelong and is a means of controlling the disease, to keep it from worsening and leading to cirrhosis. Treatment can enable you to live out a normal lifespan...although you will have to make lifestyle adjustments because of the disease and, in some instances, due to possible side effects of some of the meds. If your family still has a problem understanding (believe me, when you use the word " hepatitis " , most people have a hard time hearing anything else but!) then try it from this standpoint. Ask them if they have heard of diabetes (pancreas), multiple sclerosis (myelin sheath), lupus (various organs), psoraisis (skin), all well known CHRONIC diseases. If they say yes, let them know that is what you have, just that yours is specific to the liver. Maybe then they will get the idea that you are not going to experience a quick and complete recovery. You may also want to hit a few medical sites...many of them can give you a concise monograph, description of AIH that you could print out and share...might help. Take a look @ Medline..gives you a lot of options. Hang in there. Just listen to your doctor and do what is best for you. It has been 3 years this coming November since my dx, and I am still having to explain the same things to the same people. Stay in touch. nne > I want to thank those of you who replied to my post. I am glad to know that > I am not alone. I hate it that anyone has this. I don't understand it and my > dr can't explain to me why I have it. My husband thinks that it will go away > and so do his parents. They have told me to get off the medications because > they hear they are dangerous. My children are the only ones that understand > right now. I can't get my mother-in-law to understand that if I don't take the > medication this could get a lot worse and I could die. I am rally not > complaining it is just that it is nice to have someone that understands what I am > going through now and will be going through later. Again, thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Dear , Just read your post regarding your family not understanding this AIH disease. You might purchase a book by J. Worman, M.D. and let them read the definition of AIH in his book. He explains that AIH is a condition in which the patient's own immune sytems attacks the liver causing inflammation and liver cell death. The condition is chronic and progressive and the way my Doctor explained it you me was we cannot cure this AIH disease that you have, but we will do our best to control it with medications. You can also go into the net and find many articles on AIH and J. Worman, M.D. has many of his articles posted on the net. It might help your family members understand what you are going through if they read some of these articles on AIH. Just some suggestions for you as I can tell from your post that you are very frustrated like we all were when we were first diagnosed with this AIH disease. I found everyone in this Liver Support Group so helpfull and understanding with all my many questions when I first joined the group. There are some very knowledgeble people in the group and they are more than willing to answer your questions. I myself am still learning more and more about this disease every day and I am so thankfull for all the support and help I received from this wonderful group of people. Welcome to the group. You take care, Shirlee (Wa State) [ ] Thanks for the replys I want to thank those of you who replied to my post. I am glad to know that I am not alone. I hate it that anyone has this. I don't understand it and my dr can't explain to me why I have it. My husband thinks that it will go away and so do his parents. They have told me to get off the medications because they hear they are dangerous. My children are the only ones that understand right now. I can't get my mother-in-law to understand that if I don't take the medication this could get a lot worse and I could die. I am rally not complaining it is just that it is nice to have someone that understands what I am going through now and will be going through later. Again, thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Hi : Hope you are feeling better today. Hope we can make you feel more comfortable with this disease. I do not have it-but, my husband Cliff has hep c and cihorris. We are being storng . I 'm sure the medicine is what you need. So, keep taking your meds, as the doctor says. Cliff's brother and sister--I think sometimes denies what he has...His brother still thinks he will be ok, and not need a liver transplant.. Each day we become stronger and understand what he has and , we know, he needs a liver transplant. Thanks for listening. Love, Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Hi nne: Yes, you told exactly what I wanted to tell her. But, you came across it , so perfectly.... Everything you said is true.... Especially, that you need to listen to doctors & that we need and will live life to the fullest.. And we will have a normal life.... Just a few changes. Hope you are feeling good ... Take care. Love, Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 You are all so understanding. I guess that comes from being there! I appreciate all the good advice. It helps so much to have someone out there that knows what it is like to be so uncertain of what each day is going to bring. I have felt really good today but I know tomorrow I may not. My brain is so fuzzy I can't remember anything. I got so frustrated at work today because I just couldn't get organized and remember what I was doing from one minute to the next. I am lucky I work for some wonderful people who are very understanding. They know what I am going through and are aware of what the diagnosis is and what it means. I work for a hospice agency so they have seen just about everything. I am a Social Worker and I work with people who are dying everyday. The hardest thing is one of our patients has this disease. I see what she has gone through and is going through. It is so sad. She was not compliant with the doctors and so this is where she ends up, on hospice trying to have quality in the life she has left. She knows I have this and she has been so sweet. I wish I could make this illness going away from everyone. I can only hope that in our lifetime they may find something that will eventually cure the problem that causes the body to attack itself. I know I am having really high expectations but you never know, It could happen! Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Hello, I just wanted to thank everyone for all the replys regarding questions to ask my DR and about BMB's.Today is my first follow up appt since dx.I hope to learn more. Sorry I didn't respond individually to each who replied to me but I am totally exhausted.Hope everyone has a great week.. Thanks SharonS Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.