Gonna die of hepatitis feeling alittle down about it

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Itchyd
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/20/2017 11:05 PM (GMT -6)   
Hey guys new to healingwell this is my first post.

I have auto immune hepatitis. I got a transplant in 2015 and the new liver already has fibrosis. There will be no 2nd transplant Im not even considering seeking one. So I guess I'm going to die.

It's kind of bringing me down to be back on the same path I was on 2 years ago this time with no light at the end of the tunnel.

Don't really know what else to say.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 981
   Posted 4/21/2017 2:51 PM (GMT -6)   
hello itchyd and welcome, sorry to hear of your situation..

I am going to email one of our moderators who also has AIH.

when were you diagnosed with AIH? what does your dr say? Are you receiving any treatment and anti rejection meds? has your current fibrosis been staged(biopsy)?

please check back for the next couple days, someone with aih will reply to you.

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 842
   Posted 4/21/2017 6:48 PM (GMT -6)   
Hi Itchyd!

I'm not even sure how to start this...it sounds terrible and scary but I'm an optimist.
Can you send more info please? ppm guy had perfect questions.
Did the doctor say no to another transplant and why? What about a living donor transplant? Also, would you click on the email link beside my online name where it has member info and shoot me an email, please? Yours isn't set up so I couldn't message you. I'd like to discuss offline as there are other resources I'm, technically, not supposed to post about.

This is a very caring group of people and many of the caregivers and patients will understand your fears and you'll find lots of support here.

Please write back soon,
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Itchyd
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/22/2017 5:14 AM (GMT -6)   
I just got the biopsy and fibrosis info in the last week. They haven't told me a stage yet. I'm scheduled for an MRI in the upcoming week to figure out more.

I was originally diagnosed with AIH in 2007 and got my transplant about 9yrs later in 2015.

Regarding the 2nd transplant I'm just not interested. The first one was very tough to survive and I don't want to take a chance on destroying another liver within a few years when it could give a young kid a full life.

My first transplant was a live donor transplant.

I am not rejecting the transplant and I am on antirejection (tacrolimus) meds. I'm not sure what the difference is between rejection and continuation of the original disease but apparently they can tell them apart.

My email is itchyd at Gmail dotcom

Post Edited (Itchyd) : 4/22/2017 5:17:25 AM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4740
   Posted 4/22/2017 10:45 AM (GMT -6)   
Itchyd,

When Mike's biopsy came back with cirrhosis (stage 4) in 2003, his doc told him that if he remained alcohol free, and took his meds, he would not be in transplant danger land for about 15 years. He did not remain alcohol free and was in rough shape in 7 years. Now post TP he is doing well, but he still had Hep C for 3 years after TP and started making a mess of the TPd liver. However, with the meds curing the Hep C and his liver not cirrhotic, he was able to repair some of the damage and the liver can heal itself. I would think on enough AIH meds you could extend your life considerably.

Also, he felt guilty about using a liver that could go to a "worthy" person...he felt he was not worthy because he had liver disease from drug use in the 60s...when who knew what we know now about spreading Hep C, they had no name for it then.

I sort of look at this thinking you are unique and your history could help other AIHers post TP to see what outcomes are possible with second transplant. What if they learned how to do things better because you gave it a try? Well, just looking on bright side. You have to make your own decisions.

I have a rare form of cancer that could require a very major surgery...remove spleen, gall bladder, female organs, parts of colon, anything I could do without, then wash the open abdomen with chemo and sew me back up. feeding tube for months, etc...and I am pretty certain that at 72, I would not make the choice to do that...but so far, I am good...and will wait out a decision until it "is time." Then I will see
how I feel.

Best to you,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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