Mom is in the last stages of ESLD

Hello all... I am brand new to every aspect of this as I am only 26 years of age. Mom had been diagnosed with AIH (Autoimmune Hepatitis) right after my sister was born. She almost died in 1998 and by the grace of God and the technological advances of modern medicine, had received a liver from a deceased donor. It has been about 12 years with this liver but recently, she started going to the hospital more and more.

My mom is very private and never really let anyone know what was going on - she would chalk up her hospital stays as merely "bids for a biopsy" or we even assumed her liver was in rejection due to the constant hospitals stays. Well... I am now being told that my mommy has graft failure of the new liver - due to reoccurring AIH and non-appropriate anti rejection medications, as well as my mom not being social supported to ensure that she took all of her medications.

Her bilirubin is sky high and has tripled in the last two weeks! The doctors say that not many patients have rebounded back from levels such as those. Her bilirubin is making her MELD score a 33. :( Because she has been placed on a ventilator (breathing tube was placed due to unknown fluid in her lungs), she is not currently eligible for a liver transplant- for both medical clearance and social support. I am working on the doctors, trying to let them know that now that I know what is going on - being that I was 12 when she first got her transplant, I can be so much more for her, as well "convince" her to be in compliance 99.9%... the other .1% is to allow for human error... its like it doesn't matter anyways, because they wouldn't operate on her with her lungs the way they are, and while she is on a breathing tube.

I need to know if other's have gone through this. I am trying to prepare myself for losing a family member, but I am trying everything I can to hold on to hope at the same time.

I wish I would have known the severity a long time ago.

Nice to meet you Connie. Its good to know there is a support system specifically for individuals and their families coping with hepatic issues.

Thank you for reaching out to me <3

divadivainc,

I am sorry to hear that your mom is in such a bad place physically and that her AIH wasn't under control.  I have AIH.  I know of a couple of patients who had transplants but that is a rare consequence to AIH.  Most patients are fine with treatment...the proper treatment.  AIH is a chronic condition that usually requires lifelong medication.  The usual meds are immunosuppressants which are similar, if not the same, as the "anti-rejection" drugs that transplant patients receive.  It is possible that no one explained to your mom that having a transplant wouldn't get rid of her AIH.  It isn't a problem with her liver, it's an autoimmune disease that causes the body to attack the liver as it has gotten confused and can't recognise the patient's own liver.  The body sees the liver as foreign...so even a new liver would be targeted.  It seems that your mom kept things so private and didn't question any of her meds or take them as directed?  I'm assuming they are at least treating her with steroids to try to reduce the inflammation in her liver that has put her ESLD?  I would hope that since AIH responds to steroids that maybe even at a late stage it would still respond but that would totally depend on how much liver is still viable.  I honestly don't know what to suggest since you are saying her lungs are in bad enough shape to not allow for another transplant.  I am also assuming that you have a hepatologist seeing her?  What meds is she on?  I wish I could offer more but those that actually have or have been caregivers to ESLD patients may be able to offer more insight into her future.  Please let us know more by way of medications and what the doc has said with regards to her possibly getting another liver, if that option may come up.

Divadivainc,

I am so sorry for all that you are going through. I can understand how lost and overwhelmed you are feeling, as I was in a similar situation to what you described. I am 28 years old, and found out a year ago that mom would need a transplant due to hepatitis, and liver cancer. That's a lot to take in for someone who hasn't really lived long enough to deal with someone, let alone a parent, being seriously ill. I felt/feel a lot of things. It's easy to feel like none of your friends/peers really understand (no matter what your age), but especially so because our friends are probably young like us and living relatively "carefree" lives. I am so blessed that my mom got a liver last Friday, after being told she only had days left. Her MELD was a 34 at the time of transplant and her bilirubin was in the 60s. She was not on a ventilator, but her body had deteriorated so drastically that I seriously wondered if she would survive a surgery (and I won't lie, her transplant surgery was "rough" and she needed 12 units of blood, and has been on a ventilator for a week now). But if anyone is questioning your ability or willingness to take care of your mom because of your age, they are wrong. It's never too late to fight for your mom, and ask lots of questions - because doctors aren't always the most straightforward. Are there other transplant centers nearby you could contact?

I also believe it's important to be realistic (I like to say expect the worst, but hope for the best). I know that the past 2 weeks with mom, when we thought she really wasn't going to make it, it was impossible to even try to say all the things you're supposed to say to someone near the end because she was so confused and not lucid. She hadn't spoken in 2 weeks, and her eyes didn't even seem to actually see us most of the time. The Lactulose would help temporarily, so I just want to say that if you're mother is still lucid or has moments of lucidity, don't be shy and just say what you have to say. Despite everything, I do sincerely believe they still hear you. I know the spending time together is tough too because 90% of the time mom would be sleeping or out of it with me just sitting nearby holding her hand or just talking nonesense to try to get her to respond and feeling sad that she didn't. But it's still time together.

And please know that you are not alone - as this board can show you, lots of other people know exactly what you are going through. I know I still feel alone a lot and would like to find time to go to the transplant support group they have at the hospital. But it's true what they say, just take it one day at a time, or you'll go crazy! If you ever want to email, just let me know!

Hang in there!
hopesprings7