Becky,
You have a sick boyfriend.
Welcome to the HW forum. Like you, I am partner of a guy who was very very sick with Alcoholic Liver Disease, but he also had Hep C. Long time drinking man....not breaking up any bars, but he liked his cocktails, beer and wine and he generally had more than most every single day.
The list you made IS the list of symptoms of advanced liver disease. And it will get worse. Those changes you see in his behavior may get worse. There are meds for that. It is called Hepatic Encephalopathy And he may need to go on some BP meds for the bleeding. That is called Hepatic Portalal Tention and can cause severe (call 911) bleeding from the mouth or anus.
Just because he has a cirrhosis designation does not mean the grim reaper is at the door...especially if he has gotten sober. Some of our members who have gottten sober have lived for years....with a crappy liver and lots of meds, but they get by just fine.
However, you may be in a bit of a holding pattern right now. My partner was in this fix himself. He stopped drinking because he felt so darn bad, and had all the symptoms you list. And his doc just saw him again and again and again.
We thought his local GI doc would refer Mike to a liver transplant center because he was clearly getting worse and worse and worse. But our guy was one of those who didn't really help us out. Mike got a referral to a transplant center from another doc and the hepatolgist cleared up the confusion.
Seems that TP centers won't deal with those who have Alcoholic Cirrhosis until they are 6 months sober with documentation of their alcohol cession program. So the detox was a good first step for your BF, but he needs months of AA meetings our counseling where the doc or chair of the AA meeting signs a calendar saying he went!!! And for Mike they did weekly ethanol blood draws to be sure there was NONE in his blood also.
When diagnosed with cirrhosis in 2003, the Hep doc in our old city told him he could live 15 years with cirrhosis clean and sober. He only heard the first part....he was dying and had 15 years. He decided to die happy. NOT SO FAST. Liver disease is awful. You can see that!
So 4 years later Mike was at deaths door. When he went to the referral appointment they told him he had 3 months to live and to get his affairs in order....OR he could try the 6 months sober and see how that worked out for him.
He had to prove he wanted to LIVE before they could help him. It is a UNOS Rule.
I think you guy may be in that gap. In the UK, it is a year...not sure about
Canada.
Now, when Mike was going to AA, he got sicker and sicker. He was in the hospital about
a week a month for that 6 months. Kidney failure, pancreatitis, more kidney failure, sepsis, etc. He was a mess. I thought for sure I would lose him.
But, sober he was, and he qualified for their help, and even with Hep C and then LIVER CANCER (heptocellular carcinoma).
Just after his 6 MONTHS SOBER anniversary, Mike was transplanted. Three and half years ago. Cirrotic liver out, Tumor OUT, and now this year he took treatment for his Hep C and is on his road to living a more normal life. We don't know how much time he has....but it isn't a few months unless he finds a bus to walk in front of by mistake. Or he cooks up a giant heart attack. Something ELSE.
The docs at the transplant center were more lenient than his local PCP and specialist. They actually started his transplant preparation while he was in the hospital all those times. They believed he was serious, knew he had a lot of home support, and thought he would stay sober for the rest of his life.
Now you question, how sick is your guy? You can get a better handle on this from his labs. You can calculate what his MELD score is from them. Model of End Stage Liver Disease. Here is the URL for the calculation:
www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-score-90-day-mortality-rate-alcoholic-hepatitisOr maybe your doc will calculate it for you.
You need the createnine, billirubin, and INR lab results. Maybe you can get them from your doc if you didn't keep copies of the lab work.
When the symptoms start, the folks are generally about
Meld 8 or 10ish. My Mike was 26 the day he went to that first appointment...and the calculator suggested that gives you about
3 months to live.
But after he got sober and into a program, his MELD dropped into the teens and I knew he had more time to get well and qualify for a transplant. It was October when we got this news and his doc, with an Irish brogue, put his hand on Mike's knee and told he he'd not see Christmas if he kept drinking. That sunk in big time.
The hospitals in the US transplant folks by the sickest first, depending on blood type and such. The programs vary from
location to
location, as there are more donors in certain parts of the country than others. They generally get a TP if there is an organ available from 22-35. Some higher get transplanted and it is a wonder those folks are still with us.
The way the docs explained it to us is that some folks with liver disease still have some use of their liver, we say they are still compensated. When the liver is about
to quit, they say it is decompensated. A fully decompensated liver leads to death unless the patient is transplanted.
We have some folks who have done really well...are sober and actually have been taken OFF the TP list.
Some folks want to continue drinking and that is a sorry decision.
And some folks have waited too long to get the message, their bodies are too far along in the decompensation to survive.
It can be a very sad time.
I think you should read a lot of the posts and then come back, ask more questions. There are some very good links in the resources at the top of this forum. There is a search feature ont he blue bar above the posts. YOu can put in a specific word and it will bring you to a specific topic or a specific PERSON. Try A. Ziffle and read his posts....he is our hero....for what good can come from getting sober.
I wish you both well. Come back. We are here.
Mama Lama
Oh, and I forgot...we wives and loved ones have to stick together...If your BF is a hunting man, sportsman, gun enthusiast...get them out of the house if he starts to have any odd cognitive changes...he may get too confused to make good decisions. Just sayin....