I just read your email and we have a lot in common. My father is in end stage as well do to alcohol. He has a massive hernia as well... they doctors are very concerned. We are in the process of transplant evaluation at Mt. Sinai right now. He has been sober 11 months now and doing a wonderful job. I could write you a book right now on everything we have went through this past year, but I have to be up very early tomorrow. I would love to chat more soon. I am not sure what avenues you have pursued but from my experience, if one doctor won't do it another might. UNDNJ turned my dad down after being there for 2 months this summer. My brother and I were not happy with that and contacted Mt. Sinai and Columbia pleading for the doctors help. It worked! We all know the risk of surgery for him is high... he also suffered a heart attack in 2002... but we are willing to take the chance. We would rather him leave us trying than not. I hope you are hanging in there. You have many friends here anytime you need us. Hope to be able to talk to you soon. Wishing you and your family well!
There, forgive me, are no end-stage survivors without transplant.
As long as your father continues to drink - he cannot improve and he cannot be listed for transplant.
If that is his choice - which you must allow him to make - he will die from liver disease.
Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004. Now, on interferon and ribavirin. Hepatitis C is back.
I haven't been on this forum in quite a while - but got so much support and great advice when I was here last - my father too has liver disease - he almost died - 2% chance of survival with kidney/liver failure - my family and I moved in with him and helped him back to health - I too was searching for answers - the problem is no one can answer the main question you have - no one knows what will happen -it is different for everyone - it is heart breaking - my father made a great recovery and has been well for over a year - he doesn't watch what he eats and doesn't exercise but still continues to do well - he recenly started drinking - so once again I'm searching for answers but the problem is we just don't know so many factors play into it - I always thought if my Dad took a drink he would get soooo sick - but I was wrong - the Dr. warned even if he didn't drink his liver could fail so now he is drinking - how much more can that poor liver take??? So now I have to wait - I have to watch him kill himself - maybe he will get sick and I will need to care for him again - I just don't know - it is so hard
I feel for you and your Mom - the best thing I did was take it one day at a time - wake up and say okay I just have to get through today and then I can go to sleep and I always tried to find something positive and keep laughing and joking if you can - I watched ALOT of cooking shows (my Dad loved them) - make sure you eat and drink water - you need to be healthy:)
You caught me! But I heard KISS in the 70's (best advise from my boss) And no, I have not attended AA for several years. It was too dangerous the the SF Bay Area as I didn't have my white cane then nor did I have my legs, I was still using a walker. And since I moved to Oregon in 2005, I just didn't have the means to go nor the $$ to get there. Things are pretty far between and a long trip is not good for me.
I am so glad you wrote about DrPhil. I love that man. I have done that last year, with the fresh veggies, just ran out 2 months ago. And fruits, I love them, but they are toooo pricy and they always taste like mush. Don't know if due to the long travel or just idiots who stock them, Hah!
They said for me to avoid dairy, but i have cheated and have eggs about once or twice a month, why? because MY body screams for portien and I feel safe in eating eggs. (Hope I was right)
I hate to, but have to admit something, so please don't rip me a new one. I got assaulted last October. I fell off the wagon. It was too much for me to bear. I got weak and I have no one to help me, no friends, no family. I was so hurt that anyone would attack a 49 yr old blind woman during the day. I am not scheduled to see my doc until this June. And so I have been drinking, a little, ever since. I KNOW what it is doing, and I am ashamed. I can't even look for an AA because I am still drinking. Not everyday, not very much, just when I can not bear myself. Usually when I have a panick attack and it does soothe me, as false as that may be, as its only purpose at that time is to relax me and calm me so I don't GIVE UP!!!
I know I am going to catch sh** when I see him in June, but I just have to be honest, as I always am, and see where to go from there. I still have some time to completely quit and I try everyday. I did buy some Glucose tablets as I have low blood sugar, and it seems that that could be the cause of PART of the panick attacks. They seem to be helping. I feel great guilt after I have the drink, but that really doesn't matter, does it. But I am trying to do the best with what I've got nad pray for forgivness. I am only human and I do make mistakes. I also take detoxifyer drops at night, with docs approval, along with Milk Thistle and B50 Complex.
And you are right about no transplant, but Stanford told me that already. It is NOT law right now, but it probably will be, as the docs do not want to treat the 'self-inflicted'. Which suprises me, they treat cancer patients who smoke. One man at Stanford was a huge drug user, herion I think and meth AND drank, he had just gotten his trtansplant while I was at a liver support group. He looked like hell, seriously as did his girlfriend. But they wouldn't ever give me a transplant as I was prescribed MMJ and was only on MediCal (MediCaid), so I don't know the truth. But they gave up on me. Even though my ammonia levels were not high, my MELD score was 14 back then and they said I would need dislysis within 6 months, that was back in June 2005. So where do I stand? They still say they can only try and give me quality of life. I still am struggling over what the heck that means.
I personally think that they know how many patients are dying from liver disease and won't help those of us who got it by using alcohol. I drank no more than my husband did yet I had the weaker internal body, I guess. My parents were both alcoholics, the quiet types, and I guess I followed their lead. I just was the unlucky one. My dad and sisters love me, but they hold the attitude of 'she did it to herself' and that hurts me the most. That really hurts. Makes me feel unworthy. Funny, I WAS worthy when I helped each and everyone of them in their hour of need. And I was the only one who stayed by my mothers side while she was dying of cancer. And when I stepped up to the plate to care for my grandpa as he ws 95 and died at 97. He died while I was in the hospital, matter of fact he died the day I came out of my coma. I feel he asked God to take him and let me live. Just my opinion of things.
My life has been quite full really. But its sad that it will end in such lonliness and sadness. I truly try to keep a stiff upper lip, but I guess today is not one of those days, not for me anyway.
I appreciate all that you have given me and especially the time to vent and pour my heart out. It DOES help me, it does. This DOES give me quality of life.....being heard. I don't nedd to justify my wrong doings, nor do I want to be judged. Maybe thats why I tell it in the only way I know how, with honesty. I'll get my judgement day later, if I am deemed worthy to go "HOME", and only God can call that one, right? I pray so.
Oh and by the way, I did go online and joined 2 AA support groups for over a year, but Stanford said that wasn't good enough, I quit when I moved here and haven't returned. So I did the best I could at the time. Today is another story and I ned to work on it. Going solo is hard for me now. I used to, but I had kids and they came first. I am not real strong when its just for myself I guess. At 50 and broken, it just doesn't take the same kind of strength. I am in unchartered territory and quite lost most the time. So I smile and laugh at every opprotunity and do try and make the best out of what I got.
I will close for now and hope that anyone who reads this may find this as another person who has the same disease and is trying to cope with the same things. Well, parts of it anyway. I do believe in never giving up hope, as once you've lost that you've lost it all. I know that when I get like that, I do ask God for the strength and guidance and most of all, forgivness.
I wrote this poem when I was 12, it goes:
"Without mistakes, there's no forgiving
without forgiving, there's no love"
And I do believe that whole-heartedly. Thank you for letting me share this with you.