Hello, Hoping, and welcome to the forum! I'm so sorry that your dad is in such bad shape. A MELD score of 37 is quite high and should put him at the top of the list. However, since he's only been going to AA since June, I don't know if they will list him...or even put him through the battery of evaluation tests. What transplant center is he being referred to? Also, is he getting documentation of the meetings he attends; i.e., is someone signing a form or note after each meeting stating that he was there? I know they want documentation.
How old is your dad? Is he eligible for Medicare? If he's not working and has little income, he could possibly qualify for Medicaid. Someone should really apply for SS Disability for him right away. He most likely would be approved.
I applaud you for being there for him. I know it's a lot to take on and so much to learn. If you will go to the Hepatitis Resources folder at the top of the forum, there is a lot of educational information in there, such as the stages of liver disease, etc. Also read the Death and Dying info. Also read some of the older posts here. They are full of information.
Hunting, I'm not a fan of Shands, but I know the Gainesville one is probably better than Jacksonville and that unlike Jacksonville, they do transplants in Gainesville. If your dad doesn't have insurance in place when he goes to Shands, then he will likely have to get a financial evaluation which does include 6 months of bank statements and proof of income. When did he apply for SSD? He will get Medicare 2 yrs. from the time he applied. Medically Needy Medicaid requires a share of cost. Mine is over $600 a month, which is ridiculous. It does me no good at all. Or maybe that's just the amount that I need in unpaid medical bills after Medicare pays their part. I was never really clear on that. However, Medicaid does pay for my Part B Medicare premiums and my Part D Prescription Drug Plan premiums. I go to Mayo and their charity program picks up the balance left after whatever Medicare pays them, so I never get any bills. When I had no insurance, I went to Shands Jacksonville and went through financial evaluation every 6 mos. to get a clinic card and "city contract" care. In other words, I paid nothing for hospitalization, medications, testing, etc. However, when I developed liver cancer as a result of my hep C and cirrhosis, they treated it like a death sentence. I had just gotten approved for disability and Medicare (it took two years for approval), so I contacted Mayo Jacksonville and they saved my life. I go to them for most everything now.
Your dad's alcoholism history should make no difference as long as he's getting treatment now. AA has kept me sober for 23 yrs. next month, so I highly recommend it. However, they could want him to get that 6 mos. in before they evaluate him for transplant. That is something to ask about at the first appt. at Shands.
I can tell you that not drinking is the single best thing that your dad can be doing for his liver. So give him a lot of praise and encouragement for that.
Hoping, I haven't needed a transplant yet, thank goodness. My liver (or what's left of it) is functioning pretty well, although my enzymes are a little elevated due to the hep C. The cancer had metastasized to the inferior vena cava (large vessel), so I wasn't a transplant candidate at the time I had cancer. The treatment I received shrunk the tumor and the part that had metastasized, so they then removed the entire rt. lobe and gall bladder.
The irritability you mention is likely due to your dad not drinking. You have to remember that he was drowning his emotions and now they are surfacing. I remember that first year being difficult because little things would irritate me. I also had trouble sleeping the first 6 mos. or so. I had always had booze to turn to when I was anxious, when I was hurt, to lift my mood, etc. When it was no longer there, I didn't have the skills to deal with "life on life's terms." That is what AA teaches, through their steps. Your dad is getting something out of it, even if he's not talking. But it's going to take him sharing in meetings and with his sponsor and actively working the steps for him to become the person he is meant to be. If he is just "putting in time" because he has to, he will either return to drinking or just be a miserable sober person.
The other thing that can be causing mood swings is an elevated ammonia level, which causes hepatic encephalopathy. You can read about this in the Hepatitis Resources folder. However, if he doesn't seem "out of it" or forgetful, etc., then it is likely just his adjusting to life without alcohol.
Some alcoholics are very good at hiding the amount they drink. My dad was a closet drinker. He ended up committing suicide. My mother was an alcoholic who never got sober until an advanced age when she went into a NH. By then, her brain was gone. Of course, with this genetic disposition to alcoholism, I should never have drunk alcohol at all. But I thought I could handle it. Ha!
Your dad will receive Medicare in about 2 yrs., if he lives that long. Hopefully, he will get the transplant he needs.
Thank you, Hoping. I have been given more than one chance to live when I shouldn't really be here, so this is my way of giving back. I don't have the energy to go volunteer in person somewhere.
Perhaps by the end of 6 mos. in AA, your dad will start to actually enjoy it and want what the others with long-term sobriety have: Comfortable in his own skin, a feeling of serenity, peace, and gratitude, and a sense of humor, among many gifts that the program gives us. Otherwise, he is just "putting the plug in the jug" and will be miserable, angry, bitter, and not very much fun to be around. He does have to get out all those emotions he is feeling right now, which are likely fear, anger, and resentment that he has lost his best friend (the bottle.)
There's not a lot that you can do for him. He is the one who has to do it. Does he have a copy of "The Big Book" of Alcoholics Anonymous? If not, make sure he gets one. They sell them at AA clubs or you can even get one online (do a search for Alcoholics Anonymous or just get it at Amazon.com.) He should also get a copy of 12 Steps and 12 Traditions, which goes into detail about the steps and traditions. Just casually put one down somewhere that he will see it. He might have a fit about it, but he may also be curious and start reading.
Hello and Welcome,
I am new to the forum, so I have no advice on living with end stage alcoholic cirrhosis (I was diagnosed earlier this summer and have moved in with mother to give me assistance and support, thank God)...It took me a long time to admit it; I have been a heay drinker for 15 years and am only 35, but as you and my mother realize now is that alcoholics can become very crafy when concealing their drinking. No more of that for me; I am trying to learn how to walk again and am not sure if or when I will need to require a transplant. i start AA and Al-Anon next week and well see from there,
Best wishes for your family,
Ring of Fire 42
SadGrandma, you may have to travel to a clinic that accepts Medicaid. I know that Shands in Gainesville and Jacksonville accepts Medicaid (and also patients with no insurance), but you must be a county (or state, can't remember which) resident for 6 mos. See if you can find a hepatologist in one of the larger cities near you. You don't necessarily need a liver clinic at this point, but should be followed by a hepatologist or, at the least, a GI doc.
Since you picked up an older thread, it might be better for you to start a New Topic to introduce yourself and your situation. You will get more replies that way.