... min she is taking water tablets however she is still swollen really bad last year she has a massive bleed from her osohghaus which required a procedure called a tips procedure. she is still drinking, I am so down with it all now as I am her main carer, I have 2 babies and doing a degree in psychology. I dont have the heart to turn my back on her as she is so vaulnerable, I carnt see a positive out come for her as she really is abusing her body, it broke my heart yhe other day as i had to go into a shop and buy her a bottle of cider otherwise she woild of had a fit... what do I do please help me x
Hi, does she show any signs of wanting to discontinue drinking? It is so true that the only the person who can make someone stop drinking is themselves. I caused my family and friends so much grief over the years because of my drinking, and eventually i stopped and looked at my life and saw how much my family loved me and how i was hurting them so badly, and took action to sober up. I won't tell you it was easy, it took a long time to get enough will power to stop, and i fell off the wagon at times, but i got help and advice from a drugs & alcohol agency, who organised medical detox(es) and eventually i got a place in a rehabilitation center (for 7 months). I don't know where you live, but are there agencies near to you that you can go to for help? I would suggest asking your sister to attend an appointment (with you) to talk about why she drinks, why she enjoys it, what prevents her from stopping... that is the first step, and if she is wiling, you can keep going from there, with expert, professional help...
I also have late to end stage liver disease and I feel can say that her medium term prognosis is very poor. You know, I know and probably your sister knows that if she wants to extend or improve her quality of life that she has to quit drinking; not cut down. Quit right now.
Ascites (the fluid build up in the stomach region) is the first overt sign of decompensated liver failure and if she had quit drinking then she might have had 5 years or more. That it is refractory now (doesn't respond to diuretics) means that the decompensation is worse and she will have to start having the fluid drained from her abdomen on a weekly basis (or more frequently); a procedure called paracentesis.
The TIPS procedure (trans-jugular intrahepatic portosystemic shunt) is designed to lower blood pressure in the portal vein using a shunt. It reduces previously very high blood pressure in the lower esophagus which has caused those (bleeding) varicosities. The varicosities are very serious and severe bleeding episodes have up to a 30% mortality rate. Bleeding heavily from the mouth or throwing up blood requires a 911 call. (I have not had the TIPS procedure as 40% of people naturally develop a recanalized para-umbilical vein which acts as a natural shunt).
The best way to help at this stage is not to be an enabler of any kind. Buying her a drink might stop a tantrum but it isn't helpful except in avoiding the argument. You have to tell her that you will not aid her in purchasing alcohol. Dying of liver disease is not like you see on TV where a healthy looking person goes yellow or ruptures an esophageal varicosity and slips away peacefully in a few days. The reality is that these stages take years; getting progressively more horrible.
Maybe if you provided her with some plain language information about the progression and symptomology in end stage liver disease (Is there a nearby (Hepatitis or Liver clinic) near you? They can often provide you with lots of information). It might encourage your sidter to try and put off the inevitability of the later symptoms which become increasingly unpleasant and finally finish with jaundice, severe brain damage, finally coma, with death following in days.
It would be helpful to have her arterial blood ammonia levels tested as high levels cause encephalopathy; these levels can be lowered by using Lactulose. As ammonia levels fall in her blood stream she would become more mentally stable (her mind may feel quite foggy at the moment) but any damage already sustained is permanent.
People can quit:
When I finally made the decision to quit drinking (the Doctor had just said to me "you'll be dead in less than 2 years... "), I quit drinking, it took about 3 weeks and was no where near as bad as I had been lead to believe (it did eat away away at me for about 4-5 months afterwards). Sadly, I discover that what I did is considered a bit unusual in the medical field.
Many people manage to abstain for a few days and then reward themselves with a drink, while others simply make some decision to keep drinking or relapse in weeks, or months. Many prefer living in a state of denial and by the time alcoholic encephalopathy is established and worsening; most of these people aren't quite as reasonable as they were. It makes things heart breaking for family members as they see a loved ones personality change and disappear.
If we fast forward to 14 months after quitting drinking my MELD (Mayo end stage liver disease) score had fallen from 22 to 14 and my INR (blood clotting time) fell from 2.1 to 1.3 (just above normal). I now have a good chance of seeing out the next 5 years and being sober allows me listing for a new liver (should I change my mind on this option).
I wish you the very best with your sister as it is another sad question from loved ones about this issue. The person at the centre of this concern often seems totally oblivious to their behaviour.
My very best wishes to you, Stephen.
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