hep c & late stages of cirrhosis

my mother was diagnosed with hep c/cirrhosis 4years ago. she was 52. they believe she contracted hep c vis blood transfusion in the 70's. She found out she had hepc because she felt funny. So they ran numerous tests. By the time they found out she had hepc, cirrhosis began. she is currently in the final stages. she has been in the final stages the past year. interferon almost killed her. Her body couldnt handle it.  the past year she has had fluid build up, confusion due to fluid build up (once tapped confusion goes away) , huge belly from the fluid, sleeps alot, days & nights are flip flopped. Recently, shes emaciated, no balance, uses a walker, gets "tapped" (fluid removed every other week), water on brain (is taking meds for this), and is taking meds for removal of ammonia (laxative?) her kidneys are currently affected. She still continues to have hep flareups with sores, temp & flu like symptoms.  Thats what I know. Shes home. In bed. she has one day a week where she feels ok to shower. Then she goes back to bed. this "lingering" state has been going on for months. doctors say she should have been dead a year ago.  My question is "how long will this last for?"  Any thoughts are truly appreciated....................................

[Trish77]

Perhaps I don't know enough about this and in fact I don't.  I haven't seen you mention that she's on a transplant list.  Is your mom eligible for transplant and on the list?

I'm not sure that anyone can tell you how long this will last for.  If your doctors say your mom should have been gone a  year ago, then .. her time left is a mystery, it would seem.  I'm sorry for what you're going through.  I hope you have some support of some kind for yourself through this.

Trish

[orphanannie26]

we dont think her body could handle a transplant. shes been on a list for 4 years. Theres nothing else they can do for her & we've accepted her future so we're just trying to estimate how much longer she has.

[child24angel]

So very sorry tohear about your mom.

No one can say how long she has here on earth.
It is very hard to watch this and I can relate.  

Spend every moment you can with her, talk to her, touch her and
let her know she is loved.

All my very best to you both
Hugs
Elaine

[orphanannie26]

im going to be with her this weekend (im 2 hours away)

her doc is so convinced hes going to get her a liver but shes been declined before because the hepc was out of control and because her blood wasnt making the good stuff. IDK how he thinks he can get her a liver or thinks she can handle it but.....?

either way thank you for reaching out!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Lady Lauri]

I am sure you are 'emotionally drained'. Watching someone slowly pass, suffer is very hard to bear. I'll tell you what everyone kept telling me (but u listen!) and take care of you also, in this. Child24 knows to well, it's heart breaking.

Does your mom want to try a transplant?: Or as you said, has she accepted her situation?
I am not an expert on liver transplants, but if there is hope in that, her Dr is saying it's still possible, perhaps it is.

Either way, I am sorry for all your mother and her family are going thru. As Elaine said, spend any time with her you can, make her feel loved, comfort her and each other.

My heart goes out to her and you, LL

[orphanannie26]

hi, thanks for reaching out. Im trying to care for myself. I have this sadness about me I cannot shake. Ive been running, listening to music etc to change my mood but i think i just have to accept im going to be sad for awhile.

My mom stated prior that she will not accept a liver from her children. only one of us in a match. she said she didnt want her children hacked up. we respect that, understandable. My mom also said she doesnt know if her body could survive the transplant considering her body couldnt handle the interferon. She also considered her quality of life after the surgery vs her quality of life now weighing all of that against rejection, survival, or not making it through the surgery. its alot to think about. shes comfortable now at home, in her room, with her cat & music. She has found her peace with the situation. I dont think its right to disrupt that peace continually pushing her to get a transplant. however her doc is 100% trying to get her a transplant. IDK. I think he should be upfront, honest about the situation and allow my mother to be in peace. I even spoke to the doc about hospice at least to keep her comfortable and he said no because "were not taking that route." My mom is "whatever" and chilling out peacefully at home. She is ok with dying. The docs need to chill out with this roller coaster ride and allow the whole family peace because looking at her and her symptoms idk what the hell hes thinking.

[child24angel]

I don't understand
Your mother is young...52-55?
Just because she could not handle the interferon before doesn't mean
she can't handle it after a TP.  She is very lucky ...very lucky to have
the opportunity to get a liver.  If the doctors are telling her that, there
has to be merit in that alone.  They will NOT TP someone who they think
will not make it....they simple won't.  They will give the liver to someone else.
Many people who have been transplanted have a very high quality of life.

Just something to think about with you mom, may-be she will fight again.
I wish she would re-think this new gift of a new liver.  It doesn't sound like
she wants to go through this....but really? who knows? she may live another
10-20 years, is it not worth it to her? possibly?  maybe?

My heart is with you
Elaine

[orphanannie26]

elaine, thank you for writing back. no one has come forth with a liver. shes been on the list for 3 years. theyve declined her before because of the hepc and her blood not making good stuff (sorry if im repeating) idk what her status is now. her gastro doc (in utica) said hes trying to get her one through strong hosp. writing letters etc. the transplant doc & team (in rochester 2 hours away) said no last year. maybe now shes a good candidate. idk. there were 1300 people ahead of her on the list in the region. I guess they go by region not hospital. but with the kidney & spleen now affected she sounds like shes at the end.

[child24angel]

I understand now.  The TP team makes the final evaluation
and decisions.  Yes, the hospitals are all divided in regions.

Again, my true sympathy

Hugs sent your way
Elaine

[IAmTheWalrus]

I wanted to comment on your post when you first posted. I just couldn't think of anything that would be helpful or give you hope. I just want to say my heart goes out to you and your mother.

When I was in stage 4 the doc would not treat me because I was too sick but I was not nearly as sick as your mother. I got on the TP list and received a liver 3.5 years ago and now I am doing fine. I was able to undergo treatment for HCV after the TP. A new liver is a new ball game as far as treatment goes.

I hope she gets the new liver. It could really change her life.

Brent