Organ Transplant Community

I don't have it, but what drugs have you been on as therapy? Azathioprine, prednisone, CellCept, Interferon? Are you on maintenance doses of any of these at the moment?

yes, I had chronic active auto-immune hepatitis. I was diagnosed in 1988 and had my liver transplant in 1999 at age 37. I guess I went along the line that I had a life-threatening disease and it was up to me to make the most of life from there on. I was a single mother with two minor children and their only source of support. I made sure to keep all my doctor appointments, did all my blood work, watched my diet, and worked full time up to the day before my transplant. Don't let your life revolve around it. My thoughts and best wishes are with you.

Hi Misty,

I first heard those words last month, chronic active hepatitis and more recently found out that it is related to NASH, Auto-immune disorder and metabolic disorder as well. My mind is swimming with getting information, being informed, learning, trying to understand, asking why, feeling bad about asking why, etc. Last visit I was told within a year to 18 months they would like to put me on the transplant list. Now, I am not a candidate due to my BMI is too high of an index. Told to watch my diet, exercise, work full time as much as possible and make a follow up appt. in 8 mos. to see how far I have come.

Shockingly enough, if it were not for a high ammonia count in Dec 07, I still would of not known about this disease. According to the Hepatologist, I have had this disease for approx. 15 yrs., stage 4, cirrhosis to date.

I feel like reaching out, but not sure how. I read your posts tonight to others and thought to touch base with you.

Thank you for sharing info and sending good thoughts and best wishes to those in need!

Lynsph

Hi Misty, Thank the Lord you found out pretty early! I was 43 when I first found out that I had Chronic Hep-C. Then I had a nodule on my Thyroid (which I thought was the begining of all that I am going through now however, in hind sight now I know it was just the first symptom!). I had just finished a BS in Computer Science and was starting to work on my MS in Computer Science when everything starting going downhill for me. I had a great career as a CRM Consultant for Fortune 500 companies but, all that is gone now! Fortunately for me, not for him, I married a College buddy who is 20 years younger than me when I was still in the best shape of my life. I did the Hep-C treatment of course I had Genotype 1b one of the hardest to get rid of, so it was 48 weeks of pure hell for me! Only to find out their Liver biopsy from the begining was wrong. They thought I was only in stage 2 of liver damage, however, I was actually stage 4 (that's their story and they are sticking to it). The biopsy broke my neck and I had to have a 3 lvl anterior fusion b4 treatment, after treatment I found out that I had Reynauds Phenom, Sjorgens Disease, and worst of all Retroperitoneal fibrosis which increases the portal hypertension I suffer from with the cirrohsis. Needless to say, I was very angry once I, notice I said I, found out about all the problems I was left with after treatment. The BIG Boy here in this area for transplants was my Liver Doc thru the treatment. Because of my level of education knew enough that something was still very wrong with me after treatment. I had to go to 5 other specialist for other symptoms I was having and all the specialists I went to said, "you are in full cirrohsis.", well my liver Doc wouldn't admit that part to me! So, to make a really long story a little shorter, I pissed of the main Doctor that all livers go through for transplants in this area, he told my husband I was crazy and needed to see a psych doctor because, I was a hypochondriac. Since then I have had my gall bladder removed and my liver is pink and has lots of fiberous strands through because of NASH, and I am not overweight! I am still not overweight, and because my platelets, PPT, and INR tests are so bad I can't have surgery to get rid of the retroperitoneal fibrosis or have a biopsy to make sure it isn't cancerous, and because I mad the main Doc here mad. I can't get on the transplant list! So, my hat is off to you, if you can save your life for those kids; do every thing you can to stick around a little longer. I will pray for you and just wanted you to know keep on trying and don't believe everything they tell you! To some care providers, it is all about the money. If you don't feel right about what the doctors are telling you, don't hesitate to get another opinion! It may just save your life, and if not at least knowing will allow you the precious time to get all your affairs in order and provide some security for your kids! Never! Never feel bad about asking why and stay on top of your own medical records, this information belongs to you! Get copies of all your blood work, as well as, any CT, MRI, Sonogram, and or Doctor correspondence reports. This will help keep you from falling through the cracks in the system!

Good Luck and take care, my prayers are with you and your kids!

Hi Misty, I have autoimmune hepatitis and was Dx with in back in 1982. I was 10 when I was Dx and was finally transplanted on 7/13/1993. The transplant was s success with very minimal complications. It took me a while to get back on my feet again but I pretty much lead a normal life. I get tired a lot but they say that's par for the course. I do want to tell you though that 5 years to the day of my transplant I was rediagnosed with the autoimmune again. My new liver has been attacked by my immune system once again. I'm doing pretty well though. There's so much more I could tell you so if you'd live to contact me I'd be happy to talk to you. My personal email is kosburn1@suddenlink.net. Feel free to use it. Hope to hear from you, Kristen

Hi, my husband had a transplant two and a half months ago. The hep c came back after two months. Did you ever get Hep c after the transplant. He is so sick now, I don't know too much, and am worried. Anything you can tell me would be great. He is now on Pegasus and Copegasus and is suffering with bad stomach aches constantly as well as on alot of autosupprescents.

thanks for any advise

Hi, wondering if you can help me with this question. My husband received a transplant three months ago. When you were taking the first year of antirejection medication, did you ever have symptoms like excess gas or stomache ache after eating. Thanks

Hello All,

My name is Mary and I'm a Soldier in the US Army. I found out that something was wrong with my liver about two years ago after my daughter was born. The doctors ran so many test before one told me I had auto immune hepatitis. I went for a second opinion and was diagnosed with sarcodiosys. Then a third doctor said it was absolutely nothing wrong with my liver. I was stationed in Hawaii at the time. I worked it out with the military to send me to a location with a specialized live clinic. The doctors at Walter Reed Army Medical Center officially diagnosed with auto immune hepatitis about four months ago and I am now on therapy. It's scary because it seems like there is not much information on this disease. I wanted to join a support group and found this blog. My sister retired from the military about three years ago. Within 9 months of her retirement, she died of liver and kidney failure. Now I believe she had the same disease. Has anyone had this disease and not had to have a liver transport?

Mary

Hey Mary, I'm a West Point Cadet, and recently saw the doctors here, and was told that there was a chance i had auto-immune hepatitis. Do you know if I could still be commissioned if I have this disease? -Renner

Dyinintx - I am not sure how a liver biopsy could break your neck. I assume you mean a transjugular BX. I have had one and they did not go near my spine.

Also, every transplant clinic requires a team to make a decision about transplants. One doctor can not blackball you. However, all of us on transplant lists had to undergo psychological evaluation. Write a letter to the Medical Director of the hospital where your transplant clinic is located.

Tell that person that you have cirrhosis and are being refused an opportunity to be evaluated for a biopsy. I hope I am understanding your situation.

I was diagnosed with auto-immune hepatitis which has led into end stage liver disease about 5 months ago. I am on treatment and so far have not had to have a transplant. I just turned 28 and have a daughter as well so I am praying it won't come to that. The doctors have not ruled it out yet but with alot of meds and resrictions my liver is stable. I know what you mean when it comes to finding information, I went through the same thing, it is a very scary condition, especially when you can't find any answers! I am learning to live with the ups and downs and complications of both diseases but any tips would help!

Erin