Autoimmune Hepatitis.....Anyone else???

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BrokenMommy
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/7/2009 1:03 AM (GMT -7)   
I have had AIH for 12 years now and am about to go onto the Liver transplant list, has anyone else with AIH had a transplant...if so how has it improved your life...or has it?!?!?!?! confused
"Two years ago I held Heaven in my arms...now I hold a piece of Heaven everyday, for she is apart of her!"
BrokenMommy

FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/7/2009 6:54 AM (GMT -7)   
BrokenMommy - I just looked at your website for Gabby and have been crying since. I'm so sorry for your loss and sooooo happy for your gorgeous baby girl! What a blessing to have her. I have AIH along with primary biliary cirrhosis (an auto immune cirrhosis). It came to light while I was pregnant (which they told me I'd never experiance due to some other problems) but I have a beautiful baby boy to prove the doctors wrong! I would love to have a second child but was told a few weeks ago that I should not try to get pregnant. If I did it could be fatal for me an the baby.

I'm devastated and so conflicted. Can you give me some insight as to what role AIH played in your pregnancy? Did they ever figure out what happened to Gabby?

How are you feeling now?

I am not close to a transplant yet, so I can't answer your questions, but I hope you don't mind my questions. You are the only other person I know with a liver condition who has gone through a pregnancy.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/7/2009 8:12 AM (GMT -7)   
Hello Ami, Welcome to HealingWell. Just want tell you what a beautiful website you have for your daughter Gabby. I a very sorry for your loss..........But you now have a beautiful angel watching over your family.

I am not sure if we have any members with AIH that have gone through the transplant process. We have lot's of members with AIH. We do have members who have had the transplant for other reasons though.....

Hopefully one of them will come on board soon............take care.........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 4/7/2009 11:48 AM (GMT -7)   

Ami, your story of Gabby has me in tears.  I am so glad that you were able to have another baby.  What a miracle he is.  So was Gabby, though she didn't quite make it to this world.

I'm glad you found us.  I know you will receive a lot of support here.

Since AIH is a genetic disorder, it would mean that it's in your blood, just like having hepatitis C.  Even though a transplant can save someone from death, it does not eliminate the original disease if it is in the blood.  It should give you many years ahead where you will feel and do better than now, but as the blood circulates it will eventually affect the new liver, too.

If you are wondering about having another baby after transplant, Dr. Melissa Palmer's Guide to Hepatitis and Liver Disease states the woman should wait 2 yrs. after transplant to become pregnant.  There is a higher incidence of premature birth and low birth weight among these women, and it would be considered a high-risk pregnancy.  Having been through that, you know what that entails.  However, the doctor states that the anti-rejection drugs taken after transplant can be continued, as there is little risk to the fetus.

I hope this has helped a little.


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


BrokenMommy
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/14/2009 9:30 PM (GMT -7)   
Thank you all so much for viewing my Gabbys site. Knowing she is remembered keeps me going :) I do not plan for any more children in the future, i had a tubal about 3 months ago so thats no longer a concern since i cant take birth control :P to FinnstersMom I was told not to have either one of my babies but I knew it was something I had to try to do in my life, to be a mom. I proved the drs wrong twice, being Gabby's death was not having anything to do with my AIH as far as we know, the dr figured she was lieing on her cord wrong and it just shut off her oxygen. I was actually healthier DURING my pregnancy's than i ever had been, pregnancy is a natural immune suppresant :P I am now on the transplant list, sitting on about the top, my liver has taken a nose dive in the past week...it has all taken over way to fast!!! As far as I know my pregnancys had nothing to do with the worsening of my AIH, its just been 13 years in the making... any questions just ask :P turn
"Two years ago I held Heaven in my arms...now I hold a piece of Heaven everyday, for she is apart of her!"
BrokenMommy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/14/2009 9:55 PM (GMT -7)   
Ami, I hope you will get a new liver soon!  I'll keep you in my thoughts and prayers.

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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 4/17/2009 6:29 AM (GMT -7)   
Ami

I too have AIH but have not had a transplant at this point. I hope that you will get a new liver soon. I certainly know what a roller coaster ride you have been on for these last 12 years. I hope you are ablle to get the transplant soon and that all goes well for you. You certainly deserve some calm and peacefulness after all you have been through. Will keep you in my thoughts and prayers.

Lucy

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/18/2009 1:29 PM (GMT -7)   
Just wanted to pop in here and say that My mom has had AIH for 18 years now. She has spent most of 2009 in the hospital and sits in Surgical ICU as I type.
 
She has developed a blood disorder and they can't seem to stop her clotting. Now we're being told that she might get kicked from the list.
 
I wish you better luck than we are having and just keep your strength and fingers crossed for your new liver!
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