on the transplant list...want the scarry truth

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BrokenMommy
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/14/2009 10:16 PM (GMT -7)   
Ok we got the news today i am officially on the list(im 24 with AIH)... my biliruben is 17 and my Ast and Alts are in the 400-500 range!!! Im as yellow as a freakin lemon which i find to be hilarious lol any way i am very scarred now that it is down to the nitty gritty, scarred of the unknown so please anyone who has had a transplant that can give me some enlightenment of the real truth id appreciate it. I have a 6 month old daughter i have to get through this with so i need to know what to expect, the horrid details so i can prepare myself and family! Thanks idea
"Two years ago I held Heaven in my arms...now I hold a piece of Heaven everyday, for she is apart of her!"
BrokenMommy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2009 5:58 AM (GMT -7)   
Hi Ami, congratulations on making the list. With age being on your side you should do well. I met a young lady who was a 2 week post transplant recipient. She came to a group meeting for people trying to make the list. She was such an inspiration to all the patients and caregivers. She walked into the meeting holding a pillow against her abdomen.

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 4/15/2009 2:46 PM (GMT -7)   

Congratulations, Ami!  I haven't had a transplant, so I'll leave that to others.  However, I agree with PG that your age will be in your favor.  I did have the entire right lobe of my liver removed, due to cancer.  I used a cotton blanket rolled up tight to press against my abdomen when I had to cough.  When I'd healed some on the outside, I wore (and still wear at times) an abdominal binder.  Nevertheless, I developed an incisional hernia...not once, but twice.  Both were repaired.  I had problems with drainage bags after the last one.  They would clog up or leak.  The last one that was placed (and sewn in) finally worked.  That was last August.  Infection is another thing that can happen, and is right up there with rejection in terms of things for you (and the doctors) to watch for.

Recovery is slow, but you will get a little better each day.

Hugs,

Connie

 



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


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/16/2009 12:18 PM (GMT -7)   
Hi Ami: I have been on the transplant list for 2 and a half years. Just got back from one of my routine exams . Everthing was normal except . My biggest problem which is Ammonia. I guess you could say that is my #1 probllem. Since my liver disease was diagnosed as Cryptogenic I HAVE to stay on the list becase as they told me I could live a (normal) life or be ready for a transplant within hours. It's a terrible way to live being in the unknown zone. Hope you get some solid answers from some one on this great group of people. Congrats!!!!! june

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/16/2009 12:18 PM (GMT -7)   
Hi Ami: I have been on the transplant list for 2 and a half years. Just got back from one of my routine exams . Everthing was normal except . My biggest problem which is Ammonia. I guess you could say that is my #1 probllem. Since my liver disease was diagnosed as Cryptogenic I HAVE to stay on the list becase as they told me I could live a (normal) life or be ready for a transplant within hours. It's a terrible way to live being in the unknown zone. Hope you get some solid answers from some one on this great group of people. Congrats!!!!! june
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