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.

[BD146]

God Bless the two of you. Your sister is blessed to have you by her side when she needs you the most.
I lost my only brother 8 years ago today to the other disease, Aids. You will never imaginge the guilt I have today that I did not spend more time visiting him at the nursing home prior to his departure.  If I had it to do all over again, I would have taken time off from work, which would have been approved through FAMILY CARE LEAVE, and would have been there to at least hold his hand.  He was in the nursing home for 18 months, lost his sight and his mind, and was bed ridden. The only comfort I have is that my mother never missed a day. Even during a blizzard she made it to the nursing home.
I will pray for both of you.  I will pray for her comfort, and I will pray for your strength.  
God Bless.... Edgar

[twotells]

God bless you for your devotion to your sister.  The end stages of liver disease are difficult to hear about- but important to know about.  I'll pray for you and your sister.

My pain management for neuropathic pain includes a drug called Neurontin.  I don't know whether part of your sister's pain is neuropathic, but if it is, you might want to discuss it with the doc.  Bless you,  Dave

[thanbey]

Please clarify why your sister is on Pegasys therapy and is that sick.

Pegasys therapy has no value for an end stage patient and it can make her suffer more.

Is she seeing a hepatologist? If not, why not? If you have a university medical center remotely close to you, has she been seen there? If not, why not?

Has transplant been discussed, and if not,why not?

If you need to find out more about a center or want more information, feel free to contact me at ***@****

I'm hoping that we can make your sister more comfortable, at least, and functional at best.

My heart goes out to you.

thanbey

[woodbeegood]

be sure to take some time for yourself-i know how hard that is to do-i was my mother's primary caretaker in her last weeks; it can be so overwhelming-my thoughts and prayers are with you & your family

[catherine194]

Your sister will eventually go into a hepatic coma. It is imperative that she continue to receive pain control with a morphine drip and ativan for rest. She should be positioned to comfort. If she chooses not to eat or drink that is ok. She will need mouth care and perineal hygeine. Hospice is ok but if you feel she needs more morphine or ativan intravenously and the nurse doesn't speak up. Insist on it. Pallative care is of the utmost importance. Talk to her and if you are comfortable with this tell her it is all right to go. Make sure you have the living will and medical power of attorney on record. If she is a do not resusitate that does not mean no care. She is very lucky to have such a caring sister. My prayers and support.

[Amerabrit]

I am so terribly sorry your sister is suffering so much;  I can only imagine how hard it must be for all of you:(
While she may not always be able to express it, your sister must feel blessed to have you with her, she must love you very much...
Stay strong..