Cirrhosis Support Group

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

I am ordering my moms xifaxin from canada, It costs me $220.00 for a 3 month supply. The script is different, is is for rifaximin 400 (3xday) (rifaximin is the generic and only available overseas) there was no way for me to afford the xifaxin and we were not able to get it for free from Salix. If you search the forum the cost of this drug has been discussed in other topics and there are numbers posted where you can contact salix and get paperwork to get it for free, this did not work for me since my mom has a limited coverage insurance plan to cover labs, so they said she has insurance.

If her labs are level, see about getting the meds elsewhere and bring her home. Does your mom have a liver specialist? Has she been evaluated for a transplant? I just got mine approved for share of cost medicaid so we are starting the transplant evaluation now.

By way of reference, My mother has alcoholic cirrhosis and was first diagnosed in 1992, after an internal bleed in 2003 she has been sober and taking the lactulose, etc. Just this Feb. she skipped her lactulose for 2 days and started a whole in and out the hospital thing, it took a while to get her level, but she is surprisingly good now. I get the whole falling down thing, my mom was falling 5-6 times a night, tipping over, couldn't take her meds, it was crazy. I was up all day and all night with her, it was a nightmare.

Being on lactulose/xifaxin is by no means 'the end' My mother has been on lactulose for 10 yrs. I understand why you found it too hard to care for her, because I was considering the same thing just about 2 months ago and had you told me my mother would be as good as she is now, I never would have believed it.

My mother would be in the hospital without the xifaxin, it is a life saver. The confusion you refer to is hepatic encephalopathy (HE for short), and related to the cirrhosis due to the ammonia build up in the body, the lactulose helps remove the toxins through the bowels and the xifaxin is an antibiotic (used to treat travler's diarrhea) that helps prevent the ammonia from forming (I believe) someone will be along to correct me if I am wrong. The HE wrecks all sorts of havoc but can be controlled. But needs to be watched closely.

I have a home health aid coming in now, 15 hours per week. But really my mother is so improved, we hardly need her.

Post edited by: krishemp, at: 05/15/2012 04:32 PM

Do you have to buy the Xifaxan thru the nursing home? Does your mother have insurance? if not, go to Salix.com and look into their patient assistance program for Xifaxan..

I take Xifaxan and have a Medicare Part B plan. I pay $95 in initial coverage, $600 in the donut hole, and around $90 in Catstrophic phase. since I have insurance I am not eligible for the patient assistance program. Also, talk to your mom's doc and see if he can help you out with drug samples.

Good Luck!

Susie

Does your mom have any assets of her own? House, restaurant etc?

If not,I believe she qualifies for title 19 and the goverment will pay for nursing home and prescriptions.

I'm not sure about all of the rules, but while my mom was in a local expensive nursing home, for witch I was paying $5,000.00 per month out of her money, most patients paid via title 19.

Good luck.

Sammy

We have no insurance and limited assets. I've applied to Salix for the Xifaxin coverage. Waiting to hear back from them. Also thought of a nursing facility up to a week ago. Then last Friday, he "woke" up and has been the man I fell in love with so long ago. HE is complicated and takes a bad situation much, much worse. Sounds like she needs the regimen the home provided. Look for help. It's a pain in the butt to apply but depending on HER assets and not your life savings, there may be assistance. Good luck and best wishes. She is fortunate to have you!

Thanks to you all for responding. The doctor insists she MUST take the xifaxan 550 mg, 2 x per day. I asked about a generic and the doctor said it was not near effective enough for her. She is 84 so doesn't qualify for a transplant. She has medicare but they won't pay and yes, she has assets, her house and some savings so that keeps her from getting assistance. As for bringing her home, I don't think I can because she has good and bad days, this evening I went to see her and she's hallucinating about her first husband, 50 years ago. she thinks he was there visiting with her. It's confusing when her blood levels are "OK" then she seems to go off the deep end... I'm just afraid she will hurt herself at my home because I can't be here all the time, it's very frightening. I guess I feel comfort when I know she is surrounded by good care, 24/7.

Since she has Medicare she can buy a Part D prescription plan. She can receive special help to pay if she can't afford the coverage and her drugs. Visit Medicare.gov for information. Since she has Medicare, she is probably not eligible for Salix's patient assistance program.

Susie

Ahhh I didn't realize her age, yes it sounds like she is in the best place and getting the care she needs. Though please do try to get her some assistance, it is not fair to have to go through all of your savings. I had to do that myself in 2003 and have still not recovered.

Wow thanks for the advice everyone on care & I was curious about the Xifaxan my husband takes. He is 45 yrs old and began a bout with a demon called alcohol heavily in college in 1984. He has been tired, itchy, jaundiced, and confused lately and for a couple of months was falling and spent 11 days in the hospital in late March due to low levels and his kidneys took a beating from HBP. He hasnt been the same person since late last year ever since he got his liver stint put in hes been agitated, angry, and confused with edema and astities. He is starting to swell again, be tired, and gets winded at the slightest task. He is on Medicare / Humana for the medications but it was cheaper when he got em through the VA especially the Latalose. This disease is a slowww process with good / bad days and for me more trying lately. I wish I had my old husband back!!! Hugs to all!!!

The xifaxan and lactulose are not so much for prolonging life as for maintaining quality of life. In some respects keeping the toxin levels (ammonia) levels low works to keep you alive by reducing possible brain damage, but the real disease is in the liver. You can go on taking those medications for a loooooong time.