Newbie

Hi Gang,

I was referred to your forum by some great folks at Sober Recovery. My fiancee is an alcoholic who quit drinking Jan 19th this year after tapering down his drinking just before Christmas. He is 37 and I believe he has cirrhosis. My fiancee was drinking a 'mickey' of vodka or more a day, plus the odd glass of wine at dinner.

Around Christmas he became extremely jaundiced and fatigued. I believe he has ascites and edema in his feet - the indentation of my fingers stays for a long time after I rub his feet. His stomach is extremely swollen, and even though he tells me he has put on 10 lbs - I can see the hint of bones in his temples and chest. Over the last few months he had 'minor symptoms - heavy nosebleeds, cuts that took a long time to coagulate, etc.

It's frustrating as he has refused to see a doctor or head to a hospital, even though we're both aware that he is seriously ill. My fiancee spends most of the day on the sofa with his feet elevated and we are consciously monitoring his salt intake and I'm trying to get him as many good calories in as possible.

I have him drinking 'Ensure' as much as I can, but he complains of being 'full' and 'bloated' which I understand is a symptom of the ascites. Fiancee had a lung pulmonary embolism as a broken ankle complication (flew with a cast) many years ago and spent a month in hospital. Given the history, I am really really worried.

Yesterday, we went for a walk 4 blocks from our house and he struggled to make it. Fiancee has promised me we are going to walk-in clinic tomorrow (not hospital) to see a doctor. I just don't know what to do as I'm pretty sure he's going to come up with an excuse not to go OR be sent to get some tests done, and he'll refuse to get them done. :(

Hi Kelli and welcome to HealingWell. It's great that he has stopped drinking. That is the first big step. The second step is for him to go to the doctor and find out exactly how much liver damage there is. The third step is to follow doctors orders. The fourth step is.... as Connie stated ...get him to AA meetings and document them. Get ahead of the game.......they are going to require it anyways before they even consider him for transplant. ( He may not even need a transplant but it would be good for him anyways if he didn't.)

He is young.....he has that on his side........there's a good chance that he can beat it. But he needs to get to the doctor and take all the necessary steps to do so. Him sticking his head in the sand is not going to help.

Not sure how your relationship is with him.......But if he is going survive this......it's going to take both of you working together for him to do so. When he is weak you need to carry him and when you are weak he needs to carry you. If you are not tough........get tough.......to fight this disease.

Read our educational thread in the resource folder . It will give you an idea of what he is up against.

Take care.......thoughts and prayers.........

Thanks all for your kind words and welcome - it means a lot !


I am tough - really tough so I guess my fiancee and I have that going for us :)

As predicted, my fiancee decided Friday morning that we would not be going to the doctor. I was furious when he told me and demanded to know why. It turns out that my fiancee knows he is sick - perhaps dying ? and wanted to have a weekend at home before we go to the hospital tomorrow.

Wish me luck XX

Glad to hear that you are tough.......Let us know how it goes tomorrow.

Also please thank the great folks at Sober Recovery for referring you to us. We are very glad that they did.........Thoughts and prayers.........

Hi All,

I just wanted to give you an update on what has been going on.

I did thank the lovely folks on Soberrecovery - I believe it was 'artsoul' who referred me to this site and I am forever grateful. I have been reading all your posts and I'm glad there is a community like this.


Fiancee did NOT go the hospital on Monday and did not go to the Dr on Tuesday. Surprise surprise. There is always an excuse. I don't want to, or my new laptop isn't here or I'll go tomorrow.

I was feeling desperate and went to the local Dr in his place on Tuesday and described the situation, asking for some advice.

The Dr told me that all signs point to my fiancee's liver failing and that if I don't get him to the hospital, he will die. Dr suggested I go home and bawl my eyes out and beg him to go. Well, I've been there, done that many many times. Dr was lovely by the way and assured me that if we do go to the hospital, there is no way he will be able to 'bamboozle' them and make it seems less serious than it is - that they are unlikely to let him leave in his current state.

After I got home from this appointment my fiancee saw my face and asked "What's wrong?". I told him that what is 'wrong' is that he is dying and needs to see a hospital and he won't. My fiancee told me I was depressing to be around and sent me off the supermarket for supplies. I'm depressing to be around ?! I think my lower jaw may have dropped in surprise when I heard that.

So now it is Thursday. All week, all I've heard is the equivalent of quack quack quack quack quack. Fiancee says we are going to the Dr, going to the bank, he will let me help him shave his beard off, and the list goes on and on and nothing ever gets done. Fiancee has also promised to email his Dad and tell him what is going on but hasn't yet.

Yesterday, we really did have to go the bank and it became even more obvious how weak he is. I had to help him put on his pants and shoes and drive him right to the front of the bank. As I was helping him put on his shoes he became a bit teary. He is unable to walk the 4 blocks and hasn't been outside in about 2 weeks. Once inside the bank, he asked the teller if he could sit down while she finished the transaction.

The whole week, fiancee has been browsing the internet for new apartments and suggesting plans for travelling. Is he crazy ? Fiancee is piqued because I show little or no interest. He can not sit in the car for more than 10 minutes because he is in so much pain and yet, I am supposed to believe that he will be able to sit on a plane for 5 hours in April.

Fiancee said he would go to the hospital next Wed now. I don't believe that at all. I believe that he will have to start vomiting blood or collapse before I am able to call an ambulance and get him to a hospital. I have already decided that if he doesn't go by Friday next week, I am contacting his Dad and telling him all. His Dad is travelling around in his motorhome and is pretty far away, due to be home around mid March but I know he can just park it somewhere and fly in if I need him.

I am angry and frustrated. Fiancee has talked about wanting a light beer the last few nights - was previously a vodka and wine drinker but thinks one light beer would taste good. He is getting a light beer over my dead body.

Bring on Wed

X

Kelli sorry you're going through this.... call dad... now...quit listening to your fiance...on the medical part of it... he's obviously not making any sense ... probably having mental confusion....but who would know... doctor would have to say..read one of Timeless latest posting...decide what you're going to do...you're losing yourself inside of his self made drama trauma...if you're gonna stay under what conditions...your fiance is not in any shape to be making the decisions...and you are and will pay for his decisions... step back and look at the overall situation... what your decision is...figure out that ... communicate it to your fiance...and stand on it... he has to have an awakening... of some kind ... not saying leaving... but you have to get your foot down... and communicate clearly.... you can't be responsible for all this...you have to get some help in this situation from his dad and the medical community... you can bet he will respond to his dad... the heck with dancing around being nice... just call dad... and let him get on all this...well that's my thought...Sandi

Kelly, thanks very much for your update.  I agree with the others who said to call his dad now.  Don't wait.  You should not have to bear this burden alone.  I agree that it very well may take him collapsing (and he sounds close) in order to get him to the hospital.

Hugs,

Connie

Kelly, you did the right thing.  I'm glad your FIL is on the way.  Maybe he will be able to get your hubby to a doctor or hospital.  He can actually develop an umbilical hernia from the belly distension.  If he's eating at all, NO SALT.  When your FIL gets there and discussion turns to seeing a doctor, let it be known that there are meds to control some of his symptoms.

You might want to read what I just posted in the Caregiver's Sharing thread.

Please keep us updated and make sure to take care of YOU.

Hugs,

Connie

Glad to hear that his dad will be there the help you soon Kelli. After you scrubbed the house and let the sunshine in.......did you feel a lot better??? I know that I do. Especially if the house was weighing on my mind a lot. Just getting something done even if it is small.........will lift my spirits. When I put things off and not accomplish anything ......it depresses me more than anything.

Take care....thoughts and prayers.......

Hi All,

The last 48 hours have been the worst hours of my entire life. I need to share this with you - I feel like you're kind of family now too. Thanks Connie for your thread - you 'talked' me off the ledge mentally so to speak :)

Yes, Pink Grandma - my hands are actually red raw even though I was wearing gloves most of the time. Focussing on achieving some small or large task is good for me. I stop being angry and sad and just 'zen' out a bit.

Last night I put my foot down and I called his Dad and cried my eyes out and told him that there were no more 'deals' and that I was taking him to the hospital. His Dad organized plane tickets and he will be here tomorrow night. I have been feeling crazy and desperate all week, like I'm being dragged through hell in slow motion.

I helped my fiancee get into a bath last night and I washed his hair. He hadn't bathed in 2 weeks and I was shocked when he took his clothes off. He was too weak to get out of the tub and I had to swing him out. He's 190 lbs and I'm 120 so you can imagine. I helped him onto the toilet and I wiped his bottom. He was too weak and there was blood on the toilet paper. I dressed him in his comfy clothes and he agreed that it was a good thing to go - after I declined his putting a hospital visit off for another day.

I was calm as I called the ambulance and they showed up with the fire brigade too - I guess to help lift. The paramedic's called ahead to the ER to warn them we were coming - even though we're 10 min walk away. My fiancee is more seriously ill than any of us could have imagined. He had blood tests galore and has been on IV antibiotics because he has an infection. His feet are so swollen and sore that it brought one of the nurses to tears, I know just how she feels. Our local hospital is small and so they transferred him an hour away this morning. I got home at 4am, packed some stuff, got the cat looked after and hit the road.

From 8am to 5pm today, he has been tested and tested and tested. CT scan, blood tests, Ultrasound, the works. Today they moved him into the ICU. My fiancee's liver and kidney's are failing. He has a large cyst on his spleen and he has been receiving plasma transfusions all day because his blood will not clot. They are stabilizing him and waiting on more results likely to come back Monday. He is suffering Hepatic encephalopathy and is being given medicine for that. Also, apparently he is testing extremely toxic levels of Tylenol. He hates tylenol and has refused to take it as long as I've known him - says only Aspirin works. Doctor's can't not explain it and I can't think of anything in our home that would cause this.

The prognosis I've been told today looks poor but apparently we have to see how he responds to treatment n the next few days. I don't think he can survive 6 months like this and yet I am in disbelief that he will die. Because I love him and he just, well, can't.

I've had no sleep and I'm sitting in a hotel room watching TV and thinking. Today my fiancee sent me out to get Orange Crush and Twizzler's which were promptly confiscated by ICU when I checked with them - he's on a strictly controlled liquid diet. Fiancee is cranky and angry at me because I forgot to bring him a pillow amongst everything else and surrendered his pop and candy to the higher power in ICU. If this is 'it', then I want the next few months to be quality time, not him snapping at me because he can't have a purple or orange flavoured sugar water drink.

My fiancee asked his lawyer to change his will two weeks ago (when he was gratefully lucid) and we have the paperwork. Just needs to be witnessed by 2 people but I'm not sure how to make sure he does this. Can I ask the nurses to witness ? God, I don't even care but I know it's important to him - and unlike Orange Crush pop, it's not going to make him more sick.

Doctor has discussed transferring him to major major hospital 5 hours away but we will know Monday I guess. Concerned they will try and drive him in an ambulance - he's worried too. Mountain roads are dicey this time of year and he's in pain every time they move him.

Today I called his cousin who he is very close to and I was actually able to laugh a little, recounting some small conversations with my fiancee that remind me of his uniqueness and why I love him.

I wish I had called an ambulance sooner and I wish he had stopped drinking sooner. I wish we had more time but here we are.

Grateful for your expertise and life experience - will keep you posted.

K

(((Kelli))), I know that you are over-whelmed and over-tired and over-everything. Just know that you have lots of people thinking and praying for you and your fiance.

Take care.......

I hate to tell you but you may be looking at hours and not six months..and you need to get that will signed ASAP... my thoughts and prayers are with you... you did the right thing... please do not spend the time to second guess yourself... you are doing the best you can... you were overrun by his decisions...hang in there... Sandi

I'm so sorry to hear about your fiance - the heart wants what the heart wants - sometimes love isn't enough - I know you've given your all - take care of yourself - sleep, eat, rest - support him because you love him - he'll know and feel that - my thoughts and prayers are with you, your fiance and the doctors. Pam