My Mum has end stage liver disease!

me-
sorry that you had to find us, since your mum is so sick...but welcome to the forum.

read the hepatitis resources folder at the top of the threads. there is lots of liver disease information in there.

there are lots of supportive people here that can share their knowledge and experience with liver disease either as a patient or caring for a loved one with liver disease.

can you give a bit more information about your mum? that way you can get better answers. how old is she? what caused her liver disease? does she have hepatitis C?

if her liver disease is from alcohol use, she needs to stop immediately. AA or similar, in house rehab, whatever will get her to stop.

again, welcome to the forum.

emma

Hi Me ,
For starters please cheer up it's not your fault . Now for your mother . I was in the same boat 13 months ago . Given up for dead .This is what I was on then and now ,Lactulose twice a day to rid the body of toxins and ammonia. Aldactone 100mg ,2 first thing in the morning, Lasix (don't know much about it ) 1 in the morning and Pramin (Australian name ) when required for nausea. My GI and Hep doc ,has me on a very ,very strict diet. No added salt whatsoever ,no processed foods or canned soup ,veg etc . Lots of green leafy salads plus all fruits and berries. I try and get organic where possible. It depends how financial you are. I was at first dissorientated at hospital and then went into meltdown. It took me 9 months to get reasonably healthy under the circumstances with ESLD. Even after 3 months I didn't walk I shuffled. Rick and Dave who will be on tomorrow know plenty I'm sure they'll be here for you also . They'll pick up what I may have missed . Both great guys. Sorry Rick's AKA is Ziffle .
Until then you take care of yourself and DON"T buy your mum any alcohol .
Mick

Hello ME , I am a 43 year old male and was given a prognosis of 3 months to survive at best when admitted a few years back . I suffer from Alcoholic Cirrhosis . I haven't touch a drop since my diagnosis . It's difficult or impossible to predict how your mum's case will go because no matter how much cases have in common there are slight variables . Some are receptive to certain medications and others aren't . Hopefully she will continue to improve through a healthy lifestyle and get her medications adjusted properly . Medication adjustments will have to be done to find the right balance for her individual needs . I only managed to get to the point I'm at ( Relatively healthy ) by means of surgery , Fluid retention pills had little or no affect on Ascites ( Fluid build up ) so a shunt had to be inserted to bypass some liver function ( T.I.P.S ) . I have around 10% liver function currently and am awaiting to be placed on transplant list when my M.E.L.D reaches around 23 , I am at 8 at the moment but subsequently was at 28-32 when first admitted years back . Fighting this disease will be no easy task but it can be done . Try living in the moment and bring each day in with a fresh new will to survive , This is important no matter how bad things look at the moment .

Mr. Ziffle

Hi MMe

What a sad time for your family, your Mum only 50 and you barely grown up. I lost my Mom early...and so wished she had been there to help when my own kids were born.

My 61 year old Mike has a good outcome story also. He was told he was ESLD last October with a MELD of 24 and told he wouldn't see Christmas (if he continued to drink). His urine was cola colored, his skin and eyes were yellow and he shuffled along like a 99 year old man! His ankles and legs were so swollen they oozed goop. He was short of breath and had to take breaks to get up a flight of stairs. His platelets were so low, it was an emergency if he cut himself shaving. I kept latex gloves at hand to clean him up!

Like your Mum, he had quit drinking right before his first hospitalization. He was really sick. He went to the ER about once a month for 7 months when his meds and symptoms got ahead of him. They gave him transfustions, fiddled with his meds, gave him IV antibiotics, albumin, etc etc. It was quite a ride. But while he was OUT Of the hospital, he joined AA committed to an alcohol free life. When the docs saw he was really not going to drink, they evaluated him for transplant.   His MELD dropped to 16, 17, a bit up and down...but not in the 20's!!!!

Mike's diet has changed...lots of fresh fruits and veggies....no plain white bread! Low fat, good carbs.

They found a tumor in February. That was the icing on the cake. It pushed his MELD score to 22 and he got a liver May 1st. He is 6 weeks post transplant and getting around, driving some, cooking dinners, and is PINK for the first time in over a year!

And let me tell you, the mood in our house is much improved...with his clean living (and without the late evening alcoholic slur!)

Hopefully they can put your Mum back on the right path. Let's hope it isn't too late for good outcomes.

Mama Lama

Post Edited (MamaLama) : 6/15/2011 8:43:29 AM (GMT-6)

Hi, Me. I can't really help you much because I'm new to all of this as well. My sister has alcoholic Cirrhosis too and like your mom went through detox at the hospital. She walked in to the ER herself (was even running around on the beach that day) and 8 days later she can't do anything. She barely opens her eyes and is on a feeding tube. I wish I had knowledge/experience to share with you like the others but I all I have to offer is to let you know that I can relate and I'm sorry you are going through this. I've only been on this board a few days but everyone has been great and so very helpful.

Hello, ME, and welcome to the forum.  We have quite a few members with alcoholic liver disease or caregivers of those who have it.  I am a long-time sober alcoholic myself (nearly 25 yrs. sober.)  When I first stopped drinking (7 yrs. before the diagnosis of hep C), I became extremely weak.  It was all I could do to get up and dressed.  This is because, like most alcoholics, my nutritional status was very poor.  Any nutrients I consumed were mostly in the alcohol (wine and beer.)  When I stopped drinking, and before I really started eating well again, I was extremely weak.  It takes time to start eating right and regaining strength.

The "fluid tablets" she is on are to get rid of fluid retention and to prevent it.  Lactulose is given to rid the brain of ammonia through multiple daily BMs.  Mick, the Lasix is the stronger diuretic, but the Aldactone is a milder one that also prevents loss of potassium (a potassium sparing diuretic) from the Lasix.  That is why they are generally given together.

ME, if your mom's liver has been so damaged that it cannot sustain her, a transplant might be the only option.  HOWEVER, she cannot be listed for transplant until she has completed 6 months of documented attendance at AA meetings or alcohol counseling approved by the transplant center she would attend.  She should continue to abstain from alcohol and start attending meetings as soon as she is better physically.  A form should be made up for her noting what meeting and where and the time...then have it signed by the chairperson at AA. 

Of course, she has to abstain from drinking, and AA will teach her how to live sober.  Look up Alcoholics Anonymous in the white pages of your phone book.  Give them a call and ask for information (phone number, address) of the closest meeting to her.  Then call that number and ask about meeting times.  Or ask the first number for a When and Where pamphlet to be mailed to you.  It will list all the meetings in your town.  It is very important for her to start attending meetings, so when she starts feeling better she won't pick up a drink (or is less likely to.)  She will receive a lot of support and information at AA meetings and the sooner she starts going, the better.  Offer to go with her in the beginning.

Do read the information in the Hepatitis Resources folder (hepatitis means inflammation of the liver--not just viral hepatitis.)

Also check out the Caregivers Sharing thread for support.

Remember to take care of yourself in all this, and please do keep us updated on her progress.

Hugs,

Connie

 

It sounds like only a transplant will solve her problems, if the doctors feel her liver is in such bad shape that it will continue to deteriorate.  I can only tell you that if she abstains from alcohol and eats a proper and healthful diet, she CAN prevent it from progressing.  The meds are only preventing fluid and ammonia buildup.  They are not actually treating her liver disease.  If she still seems "out of it," then her Lactulose should probably be increased.  She should also try supplements such as Boost and Ensure.  I never liked the taste, but did like Slim Fast chocolate shakes and drank those for nutrition when I couldn't eat anything else (and never lost an oz. on them.)

She should be taking a daily mulitvitamin without iron and vitamin C (500 mg) at the very least.

She does need a caregiver, but in the end it is up to her if she really wants to quit drinking or if she'd rather die a horrible death sooner rather than later.

Hugs,

Connie

Hello me ,
Hope you're feeling better . Emma and Connie are both right ,in fact Connie's never wrong. So get your mother the vitamins and have your mum eat low salt healthy food. If she can afford it get quality juices . That lactulose can be a bit hard to take first thing in the morning . As for the AA ,I attended the Woy Woy chapter twice ,first and last. I found most of the people there were ordered by the courts or trying to get a lighter sentence regarding their drink driving ,but it does help some people. If you can't ,have someone regularly helping out and checking on your mum. She's going to need it . My wife has been a godsend to me. Does your mum have a loving husband or partner? That would be a great help. So keep smiling ,be happy and stay on HW because the guys and gals are really fantastic.
Take care Mick