Tuffgirl

Wow - this scares me. 37? Only 37? It can happen that early? I had no idea. I thought that was a progressive disease that afflicted much older drinkers (like you said, 20 years from now).

I also can't comprehend the desire to continue drinking when you are faced with impending death. Is it really that powerful over people? Am I underestimating my AH's journey (because right now he just seems so happy and peaceful - I think that's called pink clouding).

My heart goes out to you, MissGuided. It makes my petty annoyances look ridiculous in light of what you are facing. My thoughts are with you and your baby.

LexieCat

MG, you are correct. Cirrhosis causes ascites, not the other way around. Ascites can be caused by any kind of liver failure. The fluids cannot be processed and they leak. Esophageal bleeding (referred to by Laurie) can cause death.

It sounds to me like he has a bit of mental confusion. Whether that is from any kind of encephalopathy (my husband's encephalopathy cleared up over the course of a couple of months or so) or whether he is just overwhelmed and scared and not hearing things correctly isn't clear.

If he will permit you to sit in during a meeting with the doctor, you might be in a better position to ask the necessary questions. They may not know a lot of things for sure, but you can ask what they suspect and what they are basing that on.

There is a ton of info on the web about liver disease.

I know he's an ex, but as you said, he is a nice man and your daughter's father. I'm glad you are able to support him a bit through this. Just remember to take care of yourself, too.

MissGuided

Thank you Lexie, I am going to take care of myself too - Im extremely lucky to have a great support sytem in my friends and my own family. And now all you guys too!
i dont think he has mental confusion - yet. I think maybe he just heard it wrong and processed it the wrong way surely?
I am thinking I will know more tomorrow - I am not afraid to ask questions! You are right about all the info on the web - its almost overwhelming! ignorance is bliss? or knowledge is power?
I think the latter in this case, because every website on liver disease seems to say the same there are not really any discrepancies about it

MissGuided

Thankyou Tg! And hey your 'petty annoyances' ARE ANYTHING BUT! alcoholism has many tiers (and tears!)
This time last year I was extremely worried about AH's drinking and he was on the brink of entering rehab. The year before that I was concerned about his drinking but thought he would never drink enough to get cirhossis!! surely not!
stupid really.
I had to take him to hospital in 2005 because he was having trouble breathing , stomach pains etc. He was diagnosed with fatty liver.
this is what the doctor told him then...I will never forget her words.....
''Your liver has 100% chance of recovery but you must stop drinking. the road to cirhossis is very long but you are at the beginning of that road.''And what a treacherous journey to the end of that road it has been.
But back then, it was easy to think this day would never come.
And my thoughts back then were no more ridiculous or petty then the thoughts I have now. They were relevant to me at that time, just as yours are now. keep strong and I hope your AH finds recovery soon. hugs

StarCat

Possible. I suspect I have a mild case of dyslexia or something in that family - nothing severe, and it only pops up when I'm extremely frustrated. (XABF saw a lot of it before I threw him out and was always mad at me for it, I haven't had a problem with it since I stopped talking to him.) I will not only occasionally switch letters around (or type entire 5-letter words backwards!), I'll actually use the wrong word sometimes - I'll mean Wednesday but say whatever day of the week it currently is, name a restaurant I've recently been to and enjoyed instead of one I'm trying out to tonight for the first time, mix up names, etc. - but I'll have the name of the proper one in my head, it's just I say the wrong one for some reason.

Since he's currently in the hospital, that's stressful enough, so I wouldn't be surprised if it's more along the lines of what I go through sometimes.

MissGuided

I believe thats what it is, I dont think he heard anything correctly after he heard the word cirhossis. And I think he is dyslexic too also, as he gets letters mixed up sometimes. I will be asking the doctor about this so called 'the fluid caused the cirhossis' and will post tomorrow what he says.

MissGuided

I just got back from a long day with AH at the hospital.

I am still a bit confused.
Now they are saying he needs a liver transplant as most of his liver is cirrhotic. But how do you know it is when you havent done a biopsy, a cat scan.?? she said that from his blood tests and the size of the ascites, they were indicitive of end stage cirhossis.

So I am still holding on to hope. As he isnt bleeding from anywhere, he has no mental confusion as he is still talking normally. So I am hoping that they can treat it and manage until he can get on the list and get a new liver.
He wont get on the list until he is 6 months sober.
It seems like such a long shot but I have to pray and hope.

wicked

Yes, I think blood tests can be very informative as to cirrhosis.
What is next for him?
Will he stay hospitalized?
How long has he been sober?
Obviously, I don't know. I am sorry.

Beth

LexieCat

They may be "indicative of end-stage cirrhosis" but to my knowledge (and I'm not a medical professional but I did have to deal with this stuff), those indicators are not definitive.

As I said, my ex-husband's doctors were certain he would need a transplant, until the biopsy was performed several months later (my recollection was that they needed the ascites to resolve before they did the biopsy).

I emotionally prepared for the worst, and hoped for the best. The news we finally got was as hopeful as you can get.

If their prediction is accurate, the problem will be getting a transplant. Traditionally, alcoholic cirrhotics are not given the same priority for transplant as non-alcohlic sufferers of liver disease. I haven't looked at the current policies for transplants, so I don't know what the current sobriety requirments are.

MissGuided

He has been in the hospital since sunday.
Its a city hospital but honestly I just dont think he is getting the correct care there. I mean I had to ask them to consult with a GI/Hepatologist which they said they will and they will probably go and see him monday.
I mean why hadnt they done that already! oh and when he said he was in pain, the nurse offered him tylenol!!! wow!

I am going to see if I can get him transferred to a better hospital who are renowned for liver disease and transplantation.
I dont really know how long ago his last drink was. he told them it was at christmas

I am not there right now but his friend just called me and said he was leaving because they were sending him down for xrays. Maybe because his ascites was leaking from where they had drained a bit of it for testing a few days ago.

Thank you all for your comments - it has been very helpful, especially you Lexie who have been through the same thing - THANK YOU!

LucyA

Do you doubt that it was Christmas?
Because if he's lying to them, then he's lying to you, and most importantly to himself too.

MissGuided

Oh Im sure he is lying. He was just in hospital in november, cirhossis was not detected then - *sigh* and he had severe alcoholc hepatitis. Honestly I was shocked he didnt have cirhossis then and I still suspected he had it.
so between then and being admitted again last week, do i think he was drinking again? yes?
do i think he was drinking like before? no.
I think he may have been having a couple of beers to stay on the level.
This is just a guess though.
He has not denied it to me.
(Can I just say he did not go into rehab right after he was discharged in november as we were having issues with his insurance, his union, his job and a comp case he was in the middle of as he had broken his foot on the job in september.)

lillamy

I keep coming back to this post and not having anything useful to contribute. But I wanted you to know I was here, and I'm thinking and praying. Hugs.

MissGuided

Thank you Lillamy, these kind of posts are just as helpful as the long informative ones! The thoughts really do count!

ImReadyToQuit

I was thinking about having a drink today and stumbled upon this post... My prayers are with you. Thank you for sharing..

I'm 36.. Haven't been officially diagnosed with anything, but blood tests have never been good... And I sound a lot like your husband.. I'm the same drunk or sober.. I think thats why my wife has tolerated the situation..

LexieCat

Sheesh, the nurse offered him TYLENOL???

Yeah, I'd get him outta there.

He does need to be seen by a GI/hepatologist. I think a lot of doctors don't know a lot about liver disease.

Thanks for the updates. I sure know how exhausting this can be.

Hang in there. You're doing the right stuff.

MissGuided

You dont know how happy that has made me to read that - that my story can help just one person not drink today

My AH is a gentle giant and he is so popular because everyone just likes him. The alcohol never turned him into an a-hole when drunk, which seems to be the case alot with most A's.
I think thats why so many people have been calling and texting over the last few days as there is genuine concern for him.
But i look at him now lying in that hospital bed: looking so much less then his usual 6'3'' stature. He has lost so much weight, the skin is just hanging off his once muscular arms, he looks at least 10 years older then his 37 years, he cant swallow so he cant eat, he is so weak that he cant make it to the bathroom, in fact yesterday he went on the commode and I had to wipe him - which was a very humbling moment for both of us let me tell you He is crying on and off all day and is absolutley petrified of dying and not seeing his daughhter grow up. Its just so heartbreaking to witness this, he has sank so low.

Im sure if he could go back now he would have tried harder to stop or saught recovery before it was too late. I guess that it something we will never know now. I do know that he thought this would never happen to him, certainly not this young anyway

I love your user name btw! Its a great name! My prayers are with you also, one day at a time right? today is a good day!!

FormerDoormat

The nurse may have offered Tylenol for pain as opposed to other drugs because it was easier on the liver. I''m not a doctor, but there is a reason why Tylenol was offered. Perhaps it's common to offer Tylenol instead of more powerful, addictive drugs for pain to addicts, since, they are, after all addicts. Or maybe it's effective in controlling his type of pain and something more powerful isn't needed.

I'd ask the nurse why she chose Tylenol before assuming that the hospital or it's staff is inept. Perhaps it is what his doctor ordered. In a situation of great stress and where an individual has no control to change the outcome, it's common to blame others who may not deserve blame. Just wanted to pop in here and point that out. More information is needed before a judgment of inappropriate or lack of care is made.

My heart goes out to you and your daughter. Have you researched end-stage liver disease? It may help you understand what your husband is going through and what the typical outlook is for someone with his stage of liver disease. It might also help you prepare yourself for what lies ahead down the road.

LexieCat

Tylenol is one of the most damaging drugs there is for anyone with liver problems.

In Laurie's case, it caused severe liver damage.

Tylenol is the LAST thing you give someone with liver damage.

MissGuided

Yeah Tylenol or anything with acetominophen is so dangerous for anyone with liver issues.
I just think the nurses are so busy that unless that particular nurse is assigned to that particular patient, the others just dont know what every single person is in for. sad really.
Im sure she just offered it as a matter of course as she wouldnt have needed to get a prescription for it and for most people it would have been harmless.
Although I do think that his yellow eyes and jaundice would be a dead give away that he had a liver condition!!! I dont think you have to be a medical professional of any kind to see that!