Stage 4 Cirrhosis

Hi, my mom was diagnosed with Autoimmune Hepatitis about 8 years ago. She now has cirrhosis stage 4 I believe. I have read alot of the posts here and it has comforted me to know that there are people who know what I am going through. I just lost my dad on May 7th and even though we have known that she is at the end stage I am just not ready. She has varisees caused by the cirrhosis and she bleeds from the rectum.  She has had 3 major bleeds in 2 years until now. She was hospitalized for major bleeding 3 weeks ago. She went into the hospital on Wednesday did good until Thursday night then started hemmoraging was given a transfusion and put in ICU. They sent her via lifeflight to Iowa City where she was told that she has a blood clot in her portal vein so she is no longer a canidate for the TIPS surgery, or a liver transplant. They cannot do the coil procedure either. Basically they said they will treat symptoms and band varisees. She stayed in the hospital for 7 days went home for 3 days then went back for bleeding for another 3 days. She is 69 years old lives by herself and wants to stay independent. She has acsites (if that is how you spell it) is on like 30 meds. I love her alot and don't know that I can take loosing her so soon after my fathers unexpected death. But I am also scarred of her going through these episodes. She refuses to live with anyone and wants to remain independent. Since she went into the hospital she has developed new symptoms. She never was nauseated before but is now. She also has low blood pressure and is light headed alot. Everything she eats seems to go straight out the other end. She has dropped 10 pounds in the last 3 weeks but her stomach keeps growing. Never has she went into a coma. Can anyone tell me if that is what I am to expect next? Is it a coma? Doctors just sent her home with only a couple restrictions. No lifting or walking long distances. Don't know what to do or how close to the end she really is. Any help is appreciated. Thanks

Post Edited (dream chaser) : 6/21/2008 7:14:55 PM (GMT-6)

Dream Chaser:

So sorry to hear about your dad. Now dealing with your mom has got to be really hard on you. I was diagnosed with stage 4 as well. The Dr.s did'nt put me on any restriction either. I put myself on restrictions ,take lactulose which I am allowed to regulate myself, take spirolatone, and keep a sort of vegetarian diet. My ammonia levels have ranged from 169 to less than 14. When it goes up I get light headed and dizzy and my husband says I do ,and say strange thing. At the time it seems normal to me. But he just say take more lactulose. I know what he means . At this point that seems to be my symptom other than a little ankle swelling. Thank God Taka Care get rested. I will add you to my list of prayers.

Dream Chaser, I want to welcome you to the forum, and also offer my condolences on the loss of your father.  I'm sure it must be very, very difficult to now be dealing with a mother who is so ill.  Everyone is different, so nobody can say for sure how long she has left.  You might try pinning a doctor down as to whether an educated guess would give her 6 mos. or less.  If this is the case, you can get Hospice involved.  Some have nurses come to the house and some have actual residences where the terminally ill can stay.  The fact that the doctors have placed no restrictions on her is an indication that they think she is terminal.    

When I was diagnosed with liver cancer, I asked a liver surgeon/hepatologist how much time I had left.  He didn't want to answer, but I told him to just give me an educated guess.  He said, "Six months, without treatment."  That was enough info for me to know I needed to have something done.  I underwent available treatments and surgery and am here over a year later, still cancer free at 65.

Hugs,

Connie

Hi Dream Chaser,
So sorry about your Dad. I took care of my father last year and he passed on Oct 7.
My Mom is with me now. She has COPD. She has Hospice. I wanted to say that one way around the 6 months diagnosis is to ask her Dr. to right an order for a Hospice Co. to do an evaluation. That way they can decide to list her or not. Some companies are more leinient than others. She would still be independant and would also have help, companionship, supplies, a nurse, and a Dr. They will then evaluate her later and sign her up again if needed.
Carol