End stage liver disease

[SisterSue]

My sister has cirrhosis due to HepC.  In the past two months she has lost over 50 pounds in muscle mass, her immune system can't heal leg sores and she has profound weakness.  Her meds include morphine and methadone for pain control, but she needs a lot.  I am her caregiver and need to get input from others who have been there near the end of life and need some help with what to expect.  She has bouts of hep. encepalopathy, ascites, thin blood.  She in on Pegysus therapy.  I know she is nearing the end, but the Doctor says she can't give any time frame, which I understand.   She can't be left alone at all due to pain management and frequent falls.  Thank you.

[jonilynn]

God Bless you, and everyone here who has given caring informed advice. I can't even imagine what you are going through.
my prayers are with you.

[Elbi]

Hi,

My fiance was diagnosed with cerrhossis in Decemeber.  He also has Hep C.  After many stays in the hospital, he felt ok for about 7 weeks.   This week he was hospitalized for stomach pains and extreme bloating.  His eyes are jaundiced.  I do not know much about all this.  I know that he needs a liver transplant or he will not make it.  His doctor has told us this.  Tonight he is in the hospital still, he just told me he has a temp of 101.  His leg are really swollen.  He was tapped but it has not helped that much.  We live in South Florida and there are no liver transplant hospital in our county.  The closest one is in Miami.  He has not even had a liver biopsy yet.  We do not have alot of money but thank god he has state insurance.  We were told by the hospital doctor to go to Jackson Memorial Hospital in Miami and just go to the ER and have them admit him.  I feel so helpless, its like I am almost in denial.  He is only 40 years old.  From what I have been reading on here, I know his health care has not been what it should be.  I imagine its because of the insurance.  I do not know where to go for support.
Can someone please tell me where to start.  Thank You and God Bless.

[LvdByGod]

elbi, you are so welcome here for support...we will be praying for you and your fiance...i do so pray he gets his liver soon...

if you want more cirrhosis info you may want to try the link i posted above to sistersue...that's where i go sometimes to keep informed about cirhosis stuff...


http://groups.msn.com/CirrhosisSupportGroup/_whatsnew.msnw

[MajNeni]

I know you are experiencing a very difficult, wrenching time.  The others have said many good things already; I would add that you must make sure to take care of yourself, as well.  You need some time out to walk, see the sun, chat with someone, rest, and laugh a little.  Otherwise the load is even heavier.  I know.  I've been there.   Maj Neni

[SisterSue]

Thank you everyone for your kind messages and support.  My sister is on Pegysus to keep the viral load down and she has no sides from it.  She was on interferon, peg-intron, ribaviran and Pegysus.  Her liver Dr. decided to keep her on a maintenance dose in order to keep the viral load down.  I also questioned this fact, but he said since she was tolerating it, to continue.  Also, she is not a candidate for transplant.  We were at the Univ. of Washington liver center for that consult and because she has a pre-leukemia condition called myelodysplasia, she is not a candidate for transplant.  The Hep c was diagnosed at Fred Hutchinson Cancer Center when she was being considered for a bone marrow transplant for her leukemia.  So, as you can see, we are dealing with many difficult medical problems and her Doctor's are just giving her palliative care as symptons crop up .

She has voiced concern about leaving her kids and just yesterday wanted to know if she could get life insurance.  Of course, I explained that she was uninsurable.  Her kids are all over 20 now and they are having a hard time watching their mom fail.  They tend to stay away as much as possible and I understand that.  Their father died two years ago from Hep C  and the children are facing things in their lives that was hidden from them for over 20 years.  

Thanks to all of you for your input.  I will continue to make her comfortable, have good conversations and make life a positive event every day.  God bless.

[Sujo]

My thoughts and prayers are with you and your sister.  She is truly blessed to have you in her life.

Sue