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Old 05-15-2012, 04:14 PM   #1
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jazzypam HB User
Cirrhosis, xifaxan and my mother

Hello,
I'm needing some advice about the stages and life expectancy of cirrhosis. My mother was diagnosed about 2 1/2 years ago with cirrhosis. She had bouts of confusion, dementia for about 5 years before she was diagnosed so I believe she has had this disease for quite some time. She had been a fairly heavy drinker, but a social drinker most of her life, but hasn't drank in about 5 years. She was a restaurant owner for 20+ years and enjoyed her nightly wine at closing time.
She has been on lactulose for 2 years and about a year ago the doctor added xifaxan (550 mg) due to her extreme diarrhea. The Xifaxan is costing me over $1000 per month and it's so very hard to afford. I guess my question is... how long can someone live taking these drugs? Are they like a heart / lung machine or ventilator, where you can stay alive indefinitely? I don't know how long I can afford the xifaxan but without it I fear she will pass. I certainly don't want that, but affording this drug is very difficult.
I had to put her in a nursing facility 4 months ago, which was the hardest thing I've ever had to do, she started falling and would get very confused at times, walk outside, hallucinate, get very agitated, etc. I thought it best for her to have around the clock care, as I was finding it difficult to be with her 24/7.
She has had ascites a couple of times but the doctors caught it right away, put her on antibiotic and sent us on our way.
She is in very good health now, surprisingly. I think the structured environment of the nursing home is very good for her. Last week she had blood tests, the doctor called today and said her blood levels were stable and very well balanced. He even said her ammonia levels were not elevated. I assume due to the drugs. Do the drugs ever stop working to balance the ammonia or can I expect to keep buying the drugs for many many years? I am paying $4,000 for nursing care and about $1,500 a month on drugs. Luckily I have my life savings to use for her, but they won't last forever... that is why I need some feedback from others who have also been in this situation. I know the doctor would not stop giving her the drug, (since I'm able to pay for it) but if someone can not pay I'm sure the poor person would die very soon.
Thank you very much for your help and advice.
PJ

 
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Old 05-24-2012, 06:25 AM   #2
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pegkro HB Userpegkro HB Userpegkro HB User
Re: Cirrhosis, xifaxan and my mother

Quote:
Originally Posted by jazzypam View Post
Hello,
I'm needing some advice about the stages and life expectancy of cirrhosis. My mother was diagnosed about 2 1/2 years ago with cirrhosis. She had bouts of confusion, dementia for about 5 years before she was diagnosed so I believe she has had this disease for quite some time. She had been a fairly heavy drinker, but a social drinker most of her life, but hasn't drank in about 5 years. She was a restaurant owner for 20+ years and enjoyed her nightly wine at closing time.
She has been on lactulose for 2 years and about a year ago the doctor added xifaxan (550 mg) due to her extreme diarrhea. The Xifaxan is costing me over $1000 per month and it's so very hard to afford. I guess my question is... how long can someone live taking these drugs? Are they like a heart / lung machine or ventilator, where you can stay alive indefinitely? I don't know how long I can afford the xifaxan but without it I fear she will pass. I certainly don't want that, but affording this drug is very difficult.
I had to put her in a nursing facility 4 months ago, which was the hardest thing I've ever had to do, she started falling and would get very confused at times, walk outside, hallucinate, get very agitated, etc. I thought it best for her to have around the clock care, as I was finding it difficult to be with her 24/7.
She has had ascites a couple of times but the doctors caught it right away, put her on antibiotic and sent us on our way.
She is in very good health now, surprisingly. I think the structured environment of the nursing home is very good for her. Last week she had blood tests, the doctor called today and said her blood levels were stable and very well balanced. He even said her ammonia levels were not elevated. I assume due to the drugs. Do the drugs ever stop working to balance the ammonia or can I expect to keep buying the drugs for many many years? I am paying $4,000 for nursing care and about $1,500 a month on drugs. Luckily I have my life savings to use for her, but they won't last forever... that is why I need some feedback from others who have also been in this situation. I know the doctor would not stop giving her the drug, (since I'm able to pay for it) but if someone can not pay I'm sure the poor person would die very soon.
Thank you very much for your help and advice.
PJ
The lactalose is given to a patient with cirrhosis, to make sure that she is having loose stool, at least 2 to 3 times a day. This gets rid of the ammonia in her body, that her liver is unable to do. I have taken care of my husband at home for over 5 years now. The Dr. put him on xifaxan, giving us enough free samples for 21 days. (We could not afford it, and our drug insurance wouldn't cover it. I observed him for the 21 days that he took it, and saw no difference in his overall condition that would persuade me want to go in debt to continue the medication. I might add that I am a retired Registered Nurse, and the Dr. is very well aware of that fact. I would suggest that you ask that your mother be taken off the xifaxan for a month, and observe her, to see if there is a radical change in her condition. I do know that being an RN, gives me an advantage. Also, the Dr. himself told my husband that if it weren't for me, he would have died 4 years ago. I take life one day at a time, and do the best that I can. My husband still has his good days, and his bad ones, which are coming more often, but he is still able to care for himself without my assistance, but does require a walker, to help with his balance. I will keep you and your mom in my prayers, and hope this helps some. God Bless you and yours, Peggy

 
Old 06-24-2012, 06:11 AM   #3
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jazzypam HB User
Re: Cirrhosis, xifaxan and my mother

Hello, thank you for all of your nice replies and great advice. I've learned alot since joining this board.

Well, another upset.. my mother broke her pelvis last night. They rushed her to the ER, said she was too old to operate and sent her back to the nursing home. The home said that she needed rehab so I will deal with that on Monday. The hospital said she needs 24/7 care, so I have to provide a nursing service (in the nursing home) or stay with her myself. I stayed last night but got a service in there at 6:00 am to stay all day with her so I can sleep.

Has anyone had anything like this happen to your family / friend with cirrhosis? I guess I am wondering what the prognosis is and if this will make her health rapidly decline or if I should expect her to recover... She looked very weak and in a lot of pain but was getting better as the night went on...

Thanks.. again, for your kind replies.

Pam

 
Old 06-24-2012, 06:13 AM   #4
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jazzypam HB User
Re: Cirrhosis, xifaxan and my mother

I forgot to mention that she had a fall... that is how she broke her pelvis...

 
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