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1. • CommentAuthorjazmonique
   • CommentTimeJul 10th 2009 edited

    # 1Report Post
   My daughter was diagnosed with autoimmune hepatitis at the age of 6. She has been on medication every since (prednisone on an of an other not so harsh steroids). Almost 5 years ago she was diagnosed with cirrhosis of the liver and we were told she needs a liver transplant. Getting that news was the worse news I had ever had to deal with. She is now 19 years old, and was placed on the donor list at New York Presbyterian hospital this year. She has her good days and bad days, but she is really strong and very positive. The fact that she has been so strong has helped my family to also remain strong. At this time she takes a total of 24-25 pills a day just to maintain until we get the call that they have a liver. It will be bitter sweet because someone will lose a life to help my daughter get her life back. The most frustrating part for her, besides being sick is the possibility of going through this all over again. Once she gets the liver transplant, she will still have the autoimmune hepatitis. Me and my family continue holding on to the hope of living forever on a beautiful paradise earth where sickness and death will be no more! Isaiah 33:24; 35:5, 6
2. • CommentAuthorBurgette
   • CommentTimeJul 18th 2009

    # 2Report Post
   I am 62 years old and was near death a couple years ago. I lost 40 pounds and was down to 80 pounds. My symptoms were extreme exhaustion, loss of weight, night sweats, fevers and skin rashes. I also lost a good portion of my hair and my teeth. I was ready to die. Thankfully my daughter found a doctor that diagnosed me. I too was to NY Presbyterian. I believe the Doctor was Dr. Funck. I am slowly feeling better. I wish you and your daughter the best of luck and better days ahead.
3. • CommentAuthorfenton
   • CommentTimeJul 22nd 2009

    # 3Report Post
   I am in Canberra, Australia and am not aware of any similar Association in Australia. I was diagnosed with Autoimmune Hepatitis at 16 years of age, with cirrhosis at the onset of the disease ( 18 months prior diagnosis). I was given a 3 year prognosis. At 20 I consulted Dr Sheila Sherlock, at the Royal Free Hospital in London where my diagnosis and treatment were confirmed. I was on Prednisolone and Imuran (Azathioprine) which was quite new at the time. I am currently taking 10mg of Prednisolone and 150mg of Imuran. I have been blessed with some marvellous GP'S and specialists - one of whom recently passed away - and without whom I feel like I am without an anchor in my life as he was not only a wonderful physician but also a great friend (of 30 years). He was a rock who understood chronic illness and the effects it would have not only on me but on my children. He offered constant support and advice and was always available at the end of the phone (a rarity!). I have also been blessed with 2 healthy daughters (now 20 and 24) despite doubts as to the possibility of having children considering my illness and medications (I stopped taking the immunosuppressive medications through my pregnancies). I have been a single parent for the last 19 years. This has not always been easy as support and understanding of my illness has at times been a bit thin on the ground. I have also suffered depression at times. A couple of years ago I was diagnosed with oesophageal varices (a result of backpressure from the liver) which I have banded every few months - just get over one banding, and am able to swallow normally, in time for the next (yuk)! I am currently taking Fosamax - for bone density (too many cracked ribs) - and Somac (to reduce stomach acid, so we don't burn through the varices!!) All a bit of a merry go round really. Sometimes I just feel a bit fed up with it all!!! For the first 15 years or so I carried on as normal - defying advice to rest etc. I played soccer, skied, swam, ran, hiked etc and it is only in the last 10 or so that I have slowed down (just a little). I believe it is important for both my mental and physical health to try and stay relatively fit. I am finding now that when I walk (for 30mins to 1hr) I need sleep to build up the reserves again. I''m feeling nauseous with occasional vomiting, poor appetite and weight loss, mentally and physical fatigued, bloated (no (or minimal) ascites!!), aching muscles/joints and generally flat. I have not worked for the last year or so as I have needed to be ''available'' for my 95 year old mum - who is quite marvellous - but wearing out and in and out of hospital usually with heart related issues - and I don’t feel that I have the resources to sustain work as well. My younger daughter has been an incredible blessing - she cares for me when my health crumbles - which is a burden I feel she should not have to bear - she finds it pretty scary and keeps it to herself - rarely sharing her fears and concerns - as so few understand - she is also studying at uni and has heaps on her plate - though she never complains. My elder daughter has not lived at home for the last couple of years and has recently married so we don't see a great deal of her. It has been a bit of a journey - lots of ups and downs, with some really tight bends. My tolerance, patience, faith, generosity and sense of humour have all been tested. I try to cross hurdles as I come to them and know there are more ahead. I have met on several occasions the head of the liver transplant team in Sydney (just in case). I have well and truly outlived my original prognosis. I am now 52 years of age, look a picture of health, have a head of thick hair, try to keep a smile on my face and try to resist the temptation to gripe about my health (although it sneaks out occasionally!). Each new day is a blessing, filled with challenges and opportunities. I love people, hearing their stories, sharing their ups and downs. I thank God for wonderful, supportive and understanding friends and family.
   
   I pray, jazmonique, that your daughter soon receives a liver, remains strong and positive (as do you) and enjoys a complete recovery and a long and fruitful life.
   
   Also Burgette that you soon feel better. It really is quite a journey - and maintaining a positive outlook is so important - as is having positive people around you - like your daughter.
   
   I look forward to hearing your updates as I will be keeping an eye on this forum.
4. • CommentAuthorjacqueline
   • CommentTimeJul 27th 2009

    # 4Report Post
   Hi everyone, i am new to this site. My name is jacqueline and i'm 43 years old. I first became ill at the age of 23. My symptoms started very suddenly with aches and pains, fatigue, fevers, memory problems etc. It was 10 years later before i got a diagnosis of auto immune hepatitus. By this time i had lost a lot of weight, was sick alot, slept alot and just felt terrible. A year or so later i was diagnosed with lupus then mixed connective tissue disease. So i have quite an array of problems. I have been on prednisolone for 10 years and cellcept about 5 years. My recent liver biopsy showed it had progressed to stage 2.
   I live on my own and the struggle is constant, especially with the fatigue.
   Jazmonique, i really feel for your daughter getting this illness at such a young age. Its great that she has a positive attitude. it goes a long way with getting well. Hopefully better treatments will be found in the near future.
   My brain is very foggy this evening so i will keep it short.
   I just wanted to say hello to the people here and send love and best wishes.
   I hope to post again soon when i feel a little brighter.
   Love and hugs x