Cirrhosis and just 22

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ButterFlyGirl
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/26/2009 11:02 PM (GMT -7)   
 
 
 
   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. wink
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..

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/26/2009 11:28 PM (GMT -7)   
Hello ButterflyGirl and welcome to HealingWell. Yes we do have members who have Autoimmune hepatitis. And yes we do have members who have cirrhosis and have never drank. Hopefully someone will come on soon with some answers.....In the mean time..........

Google Autoimmune hepatitis or click on our Hepatitis Resource Center to the right.........you should be able to find information about it. I believe it is when a person's immune system attacks their liver......but I am not certain as my husband had Hep C.

Anyways you found the best forum on the net.......our members are very knowledgeable and compassionate..........

Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/27/2009 2:52 PM (GMT -7)   

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.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


transparent
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/27/2009 3:44 PM (GMT -7)   
when I initially found out I had hep B the doctor thought I may have auto immune so we did the test and it was negative, it is very prevalent in your age group my liver specialist said, but she also assured me that most of the damage is reversible with treatment and a very healthy lifestyle, I live in San Francisco CA and always heard health care in the south is better than in big cities so hopefully you will get what you need there. GOOD LUCK with your doctors visit and take good care of yourself.

itsme
Regular Member


Date Joined Mar 2007
Total Posts : 44
   Posted 2/27/2009 6:41 PM (GMT -7)   
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

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/27/2009 9:25 PM (GMT -7)   

Butterfly

Vanderbilt Hospital in Nashville has some very good heatologists.  They also run a very tight ship in their transplant program.  If you are close enough to see them I would try.  HOpe this helps.

JoAnn


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/28/2009 8:11 AM (GMT -7)   
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.
Butterflythree
 
There is always hope!


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 2/28/2009 8:44 PM (GMT -7)   

Hi, I have AIH, too.  The course is unpredictable, so you really have to take one day at a time.  You may be able to have a child, or not, but the most important thing is that you do the most you can to stay healthy and take your pills.  You can have children without having to give birth,too.   We know it is hard to make any decision with a unpredictable illness hanging around.   Just dont hesitate to ask us and your doctors about specific questions you have.

 

keep posting!!!! yeah


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/28/2009 9:30 PM (GMT -7)   

Hi Rhonda

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

JoAnn


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/4/2009 8:35 PM (GMT -7)   
Hi, I'm new and wanted to share. I'm sorry that you are so young and being diagnosed with AIH. I think my friend had this and it was just left untreated which took her life at age 22. The doctors told her mother that her liver was that of an old man who drank from day 1 as well.

However, sadly, this is not my only experience with AIH. My mother was diagnosed with AIH at age 35. She is now 58 and we have been very blessed to have made it this far without a transplant. The doctors have been clueless all these years as to where AIH comes from other than we could figure out that stress was the trigger for the "attacks" as we called them. Prior to my mom retiring at age 50 we were able to mark her "attacks" on the calendar based on her work schedule and events.

And now, at age 58, I'm taking her back in the morning for her second draining of her lungs this week and another scope through the jugular to find out why the TIPS isn't working. She spent 18 days in the hospital in January and had the TIPS done. Within 24 hours they were draining her, again, and said it took up to 6 weeks to work. Something that I was not aware of, even AFTER all the research I had done. I thought it was immediate.

BE thankful you feel good and have someone at your side to take care of you. My mom lives alone and was left by her boyfriend of 10 years because he couldn't deal with her medical issues any longer.

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 5/28/2009 7:09 AM (GMT -7)   
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
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg + Prednisone 5mg
 
 


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 5/28/2009 7:11 AM (GMT -7)   
ooops, I guess it had been that long that I hadn't removed the 'pred' off my signature!
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg + Prednisone 5mg
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/28/2009 1:31 PM (GMT -7)   
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.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 5/28/2009 4:01 PM (GMT -7)   
Hello Butterfly girl. I am so sorry to hear about your autoimmune hepatitis. I also have this condition. I was diagnosed when I was 19. I do not know how I got it either. No one in my family has it but my dad has hep C. I was on prednisone and cellcept for about 2 years. These medicines helped alot. I no longer have scarring and drink once in awhile. I haven't had a flare for 3 years. I got pregnant last year from a guy I was not dating. I got an abortion. After the abortion my enzymes went up a little bit, but then they stabilized again (without medicine). I took a biopsy after the abortion and I did not have much scarring. I am 24 now. I am trying to quit drinking all together. I wish you the best of luck. If one med doesn't work, talk to your doctor about others. I am also happy that you met a guy and are getting married. I've just had one serious bf but it didn't work out. I hope I am as lucky as to meet a guy. I hope you can have a baby and when you do become pregnant I hope that you don't get a flare up! I wish you the best and you are in my prayers! Think positive. God is always with us.

Post Edited (confusedgirl22) : 5/28/2009 5:06:12 PM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 9:43 AM (GMT -7)
There are a total of 2,732,997 posts in 301,074 threads.
View Active Threads


Who's Online
This forum has 151228 registered members. Please welcome our newest member, Acro1010.
358 Guest(s), 13 Registered Member(s) are currently online.  Details
notsosicklygirl, teacher2many, PeterK, tickbite666, Wanda1225, Serenity Now, smlafleur, JEN02, Paxton, pmm73, NewDay, Mustard Seed, Meshawmama


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer