Cirrhosis Support Group

My 59 y/o brother was diagnosed with end stage cirrhosis in Feburary. He had an esophageal bleed in Dec of last year. He has no insurance and has been seeing various drs. at a free clinic. Last month his contract ran out with the free clinic. You have to have a job to go to the clinic. I have since got him into another program that only has him paying a minimun payment to see a dr. Since the bleed, he has not been able to work. In 2 weeks, he gained 27# of fluid. Dr. put him on a strong diuretic and drained the fluid from his abdomen. At this time they did a liver biopsy and confirmed the diagnosis.He went back down to his normal weight but over the last 6 months, he has lost muscle weight, but continues to weigh the same thing. Hasn't had anything to drink since Dec. He had drank all his life starting when he was in his early teens. I would now liken his fluid retention to a pregnant woman carrying twins who is ready to deliver. Feet and legs are swollen till he can't get his shoes and socks on. He doesn't sleep hardly at all. Maybe 2 to 3 hours during the day. He vomits and gags with even a sip of water. Has 10 or more bms per day. Absolutly no energy. I am noticing that at times, his speech is slurred and that he seems to be losing his concentration to carry on a conversation. Drs. are basicaly not doing anything for him except for a diuretic.

I feel at such a loss. I know he shouldn't be alone all the time, but don't know where to turn. I am not well myself, so it is almost impossible for me to take on his full care. His daugher works full time, has a husband and 3 small children, so it isn't possible for her to move in with him either. He absolutly refuses to come live with either of us. I know at this rate he can't be with us much longer. It is so painful to watch him slowly die. Where do we turn for help?

21again,

Welcome to the group .Has he applied for disability? Medicaid ?

If he has quit drinking Has he been seen by a transplant center? Most People with cirrhosis usually have to apply for disability.

Ask for a referral to a transplant center near you , If they refuse. Call the center yourself and ask for help.

Even if he decides not to have a transplant they provide great care and have the top Hepatologist there.

But first get started applying for his disability and medicaid NOW.

I hope this helps some let me know what happens.

Gail

Gail, Thanks for your reply. We are in the process of applying for his disability, but I am afraid he will never live to see his first check. Money is not so much the problem as he has a small amount that he inherited that is enabliling him to survive on. I think that the fact that he has no insurance is the reason why drs are not even suggesting a transplant or maybe he's too far gone. I usually go with him to the dr but it is hard to ask flat out ?'s with him sitting there and basically not wanting to talk about it. To tell the truth, I think he has accepted his fate and just wants comfort care from the dr is the only reason that he is still going. Last week, he made his will, appointed a poa, and gave over his bank account to his daughter. I think he knows the end is near.

Again, thanks for your reply. Keep us in your thoughts.

Gayle

Gayle,

Hang in there you would be surprised how long some one can last.

If you get along with his daughter have you talked with her about plans for his care.

I doubt he has gone too far as you have to be at death's door to get a liver.If he has enough of a inheritance see if it can be place in a fund for medical care only and him still qualify for medicaid once his disability is in place.

I would urge you to at least talk to a transplant center. You would be surprised at the programs available. And as I said you can't find better care.

And here's something else cirrhosis caused by alcohol usually improves after the person has quit drinking . It takes along time but they usually do improve. I know several that have improved enough to come off transplant list.

If he truly doesn't want help there's not much you can do. But he may not realize the options out there.

Gail

Gayle,

Welcome to the group. I am sorry that your brother is so ill. My husband has last stage cirrhosis too and it is hell trying to deal with this illness. There is no easy way to deal with it because it just eats you up if your the one sick or the caregiver it is a horrible ordeal. The only thing they are doing for my husband too is the diuretics and they have him on a vitimin supplement because he lost so much muscle mass. If your brother has applied for SS there is a six month waiting period before they accept you. Unless you go on dyalisis if you have renal failure you get on automaticly. My husband got SS last year in Nov. but he can not get on Medicare until Nov. 2010 unless he has kidney failure. My husband has been vey sick and on the edge of death a few times and he always comes back. I am so sorry another person has to go thru this but when I found this sight we had a lot less members. It seems to be growing everyday.

Please feel free to vent anytime you need too. We are here for you to help you find peace with what is going on around you. I will keep your brother in my prayers and you too. It's very lonely going thru this and sometimes it is easier to explain it on a website then explaining it to a friend. Gail is a great source for medical information and she is there for all of us too. She is a blessing to this site.

Keep your chin up,

Alicia

Took my brother back to the dr today. He had gained 23#, all fluid since June 1st. His legs look like they will pop open at any time. Dr said his bp was so low that he would not attempt to drain any of the fluid and that it wouldn't do any good anyway. It would be back in less than a week. His eyes are now becoming juandiced and the palms of his hands and feet are red. Are we looking at the end? He isn't sleeping much, but then when he does sleep, it's a deep deep sleep where we can hardly wake him up. I can't see that he can last much longer like this. It's so sad to think that his life is almost over and him not even 59y/o. His daughter has moved in with him and we have contacted hospice. Please keep us in your prayers that we can provide as much comfort to him as possible.

Gayle

Gayle,

You and your family are in my thoughts and prayers.I am so sorry that things have gotten so bad.If he has accepted this all you can do is just be there for him.

((( hugs ))) to all of you

Gail

Yesterday we met with the Hospice represenative. At least things will be a little easier with someone to call on when we have questions.

Thanks for all your prayers and concerns. Mine are with all of this group, also.

Gayle,

I am so sorry that things have gotten to this point so fast sometimes you just never know. Your bother is very lucky to have a supportive family. My husband has been on the edge of death and come back twice he was in intensive cre for 6 days last year and I was sure he would never come home again and he did don't loose hope only God knows when we will be called home. This site is here to support you when you need someone to vent too please keep in touch. You and your brother and family are in our thoughts and prayers. We are here to listen.

Alicia

Gayle,

I'm glad you are getting some support. Hospice has a lot of different programs so try to take advantage of all that you need.

Gail