Cirrhosis and just 22

 

 

 

   I found out just when I was 16 years old that I had Cirrhosis of the liver and  Autoimmune hepa***. I did not know what to think about that. Even when they told me

I had 2-3 years to live.Here I am today at 22 and the past 2years I have been so much better. I have been feeling alot better then I have in for ever. I met a man who has been taking good  care of me for almost 2years, and we are getting married 3.27.09 really soon.

 The drs dont know how I got it. I dont drink or do anything. so they dont know how I got it.

I have been looking and looking for people with cirrhosis that ever did drink. the drs told me that my liver looks like someone that had been drinking there hole life like an 100year told man... or woman. the drs even said if I were to drink from the day I was born it would not even be like this...this bad.

 

Not a time to joke but he did. at that time I had to get my blood done every week then I stop. I had some done a few mos ago and it came back good. I was happy.

But now comes the time I am 22 and getting married we want to have a baby soon.

and with my liver I may not get to have a baby. I had to go to the drs in TN and that was just the other day. I have to have some test done and after I get that done Ill know more. but after she talked to me we dont know if we want to or not. I could die if we try to have baby. I wish this did not have to happen to be at all. and I wish i knew why. I hope to find it out when i get this test done I have to go back to tn and see a liver dr up there and maybe he can tell me why and how I got it.

 

I just want to see if anyone out there knows or even you have Cirrhosis and not from drinking and has never took a drink...

 

 thanks for reading this..

Butterflygirl, I'm glad you found us.  You can get a lot of support and information here.  As PG said, we do have members with autoimmune hepatitis.  I suspect that your cirrhosis is a result of that disease.  I also have cirrhosis, but it is from hep C.  Cirrhsosis is basically scarring of the liver.  As the liver disease continues to attack the organ, the more scarrring occurs.  There is no cure for cirrhosis, but you can slow down the progression of the disease somewhat by eating well (no red meat), getting plenty of rest, and basically taking good care of yourself.  I'm really glad to hear that you have found someone to take good care of you, but you must also be good to yourself.

I'm not sure what the issues would be about having a child.  Since you have an immune system disease, it could be that the disease would be passed on to the infant.  I hope that you will find some definitive answers at your doctor visit in TN.  Please be sure to come back and let us know the results.

Again, welcome to the forum.

Hi Butterflygirl,

I also have Autoimmune Hepatitis.  Have had it for 2 years now. cirrhosis is caused by the liver being scarred from being attacked by your immune system as hep93 said.

My liver biopsy shows I have stage 4 cirrhosis and was told to expect to need a transplant within 5 years.

 I have seen 3 Doctors and have 3 opinions - The Dr. who ordered the biopsy said I need a transplant- they sent the slides for 2 opinions and they are both different.

I have seen the top liver specialist in the south, he says I am ok. Just to eat healthier and to loose weight.

They don't know is the bottom line. 

If you look at me, I look fine, I don't look sick.  But my liver is supposedly shot.

I am currently taking Imuran, which suppresses the immune system to prevent further damage. 

You need to see a Hepatologist who specialzes in AIH. 

 Are you taking any medications?

Regards,

Rhonda

Welcome to the forum ButterflyGirl, I am really glad you found us. As you can see there are many caring people here. This is a great place for knowledge and support. Are you being treated for AIH?

I wish you the best of luck and congratulations with your upcoming wedding.

Hi Rhonda

I'm curious Who is the top liver specialist in the south?

JoAnn

Hello everyone,

I haven't posted on here in what seems like, forever! Sorry about that...I have to say I've been busier on a Yahoo group specifically for AIH patients. I did come on yesterday to check on JohnCT and then thought I'd check on Rhonda (itsme) too.

It was good catching up on old posts.

So I came across this one. Sadly, it isn't unheard of to have children/teens diagnosed with AIH. There is an 18 month old and a few under 5 on the Yahoo group (obviously moms are writing in )

ButterFlyGirl, pregnancy can cause relapse/flare. Depending on how damaged your liver still is (some, not all, damage can be reversed with treatment), they may say it's OK. It would be considered a 'high-risk' pregnancy and you'd need to see a high-risk ob-gyn and make sure that person/team is in direct communication with your liver specialists. Personally, and I know it's easier for me as I already have a child, I wouldn't risk it. There's always adoption... What meds are you currently on?

Rhonda...so sorry to hear of your other complications (pleurisy)...I hope you are doing better. I'm hoping I remember this correctly from another post but you had weaned off your pred at a pretty quick rate from the 5mgs and had severe joint pain, correct? Rapid weaning from pred causes joint pain....the slowest wean is the final wean. I spent 11 months on 5mg and it took 2 months to wean to zero. I had to drop 1mg every 2 weeks with a blood test before, in the middle and at the end to check LFT's. I haven't had any pain. There are a few people on the other group who dropped too quickly and did experience the joint issues as well. There are also a few who could not tolerate the imuran and are on other immunosuppressants. I do hope you are well now.

Mrsquickgt....what meds is your mom taking? I'm guessing she has cirrhosis and that's why you are inclined to think that she may need a transplant? Cirrhosis also does not mean one will ever need a transplant. It's easy for us to get scared and assume that once that happens, it's a certainty but the liver has an amazing ability to regenerate...even when the initial docs say a transplant is in your near future. There's a girl on the Yahoo site who was diagnosed when she was 10 with severe cirrhosis. She barely had any viable cells. Her mom asked them to try medication first...she is on year 6 of only being on meds and is doing great. They believe what they see on her CT scans is regrowth.

Not everyone can pinpoint a 'cause' for their AIH. Most of the time it's simply that we had a virus (even the common cold) and our immune systems went into overdrive, mistook our livers as the invading organism and attacked it. Sometimes it's a reaction to another medication. That's why it's important now to watch what we put into our bodies. Double check all over the counter and prescription meds with your hepatologists. Don't assume that your regular doc is familiar with AIH so make sure they double check with your hep too before they treat you. Mine is great, she calls my hep whenever anything happens with me.

Sorry so long...guess that's what happens when you don't pop in to see what's up for a while...

I hope everyone is well! I'll will try to be better and being on both sites!

Dany, it's good to have you posting here again.  Thanks for the info you provided the others.  AIH is a different ballgame than hep C and I'm not very familiar with it.  So please do stop by once in awhile.  I'm glad you are doing well and are finally off the pred.