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Posted 4/4/2011 1:16 PM (GMT 0)
Hi Everyone

Just a quick question, mys husband Ben is turning into a baby elephant from fluid retention.  His tummy looks the same as mine when I was 6mth pregnant and his legs and feet look like elephant legs.  His feet are changing to this red/purple colour.  As you all know he is a very difficult patient so I was just wondering what can happen from holding all this fluid and not having it drained?  He hasn't been drinking alcohol for the last week or so and I have had him on the fluid tablets again and monitoring fluid going in but nothing seems to be working.  He had his stomach drained about 18mths ago but now won't go back to the hospital (very very bad experience last time he was there and now I have no hope).  He knows things are on the down hill run but I just wanted a bit more info on what it all means if someone could help me. 

Thanks again everyone turn

Krista

Posted 4/4/2011 5:50 PM (GMT 0)

Krista, are you restricting his salt intake?  He needs to be on a very low sodium diet.  Even with that, it's doubtful that he will be able to reduce fluid retention much unless he gets drained.  Try to get him to go to an ER at a different hospital.  Otherwise, as Rick so clearly stated, he is going to die an awful death (and a slow, painful one.)

Hugs,

Connie

Posted 4/4/2011 7:47 PM (GMT 0)
Krista:

 

Low sodium is a must.

If he's not on Aldactone and Lasix, he should be.

Draining his abdomen may be neccessary; the fluid can get into the plueral space (between lungs and chest), which will make breathing difficult.

Posted 4/5/2011 12:21 AM (GMT 0)
Thanks all he is so stuborn it makes me mad then I hat myself for wasting time being mad at him but unfortunately he just won't go. A brief history about my husband is his partner he had prior to me is the mother of Zac (who I have now adopted) and she died after complications through child birth. He was 19yo when this happened and raised Zac on his own until Zac was 3.5yo and then I came onto the seen and quickly moved them in with me at my parents house. Ben's parents are both alcoholics and handed Ben a bottle of whisky at the hospital when Zac's mum died and that is just how he dealt with it, drinking. A very sad situation that Ben has never got over. He holds alot of guilt and regret and has always struggled with depression and anxiety I believe from this. Over the years we have built a life together and had a baby girls who is now 14mths old but I don't think anyone could fill that void. I now think he thinks this is a way of ppunishing himself for what happened and also believes that he will be with her again. He also knows now that Zac will be OK with me and that we have Phoebe (our little girl) to keep us going. He had 2 years of treatment and was continuely mistreated to a point where he just stopped. I spoke with our GP and he said that I can force him to go but I know he will never forgive he and I just don't know what to do as he has just given up on life and struggles everyday. I'm affraid if I go against him then this is just to benefit me but he doesn't get how hard it is to watch the man you love fade away and die. I think what he is asking of me is just as cruel but he doesn't see it that way.

Yes Mary he is in alot of pain and struggles breathing when he is laying down. He also has this lump that has appeared in the centre of his adbomen inbetween the ribs. This is also growing and I have no idea what that is. His face is bloated and eyes keep weeping as well but his feet and ankles look like they are going to pop! I have cut salt intake down but never really had a large salt intake to start with as I knew that was not good and I hate the taste of salt so don't use it in cooking. I know this sounds terrible but I took photos this morning of this stomach and legs so he could see what he looks like. Didn't really help but I thought at least if Zac ever started drinking I can haunt him with these (only stirring but don't ever want him to follow in his fathers footsteps)

Rick you said that the fluid can kill him, sorry but how does this work and how long do we have do you think? Sorry but maybe I could try some more scare tactics with Ben

Thankyou everyone so much for listening and helping me through this. You are all my shinning light at the moment so thankyou so much xxx

Krista
Posted 4/5/2011 1:07 AM (GMT 0)
Krista,

I am so sorry that you, Ben and your family is going through this.  Continue to be strong.  Keeping you in thoughts and prayers.

Emma

Posted 4/5/2011 2:48 AM (GMT 0)
Krista, the lump you mentioned could be a hernia (from the fluid pushing his intestines outward), a tumor, or the ascites itself.

Nobody can tell you how long he can go on this way without treatment. Generally, as Rick mentioned, the fluid will cause great difficulty breathing, so he's not getting enough oxygen. The kidneys start to go at some point. There are a number of things that happen, ending in multiple organ failure.

Hugs,
Connie
Posted 4/5/2011 4:12 AM (GMT 0)
Thanks Connie for explaining that to me, I think I am up to speed with things and then another symptom comes knocking.

Thanks Rick also for sharding what you went through, you do remind me of Ben. He too would never cry and was known as the party animal, if there was a good time to be had ne was there with bells on and usually the one entertaining everyone else. He always said he was here for a good time not a long time but in saying that I think he thought he would go down in a glaze of glory not fade away like this. I waited for the knock on the door everytime he left on the motorbike, expecting he was killed on that thing, he just lived with no barriers and I think this is why it is also so hard to watch because he was always so full of life, yeah with a beer in one hand and life in the other. He did give up for two years and was put on the transplant list (which later on he took himself off). It was horrible as you said but by the time 2 years past he was doing OK, he had an infection in the bone of his ankle that distryed the bone completely and the doctors wouldn't operate as it was to risky and that was it. He couldn't walk properly had a pick line so the nurse for come everyday to give him medication to keep the infections at bay, he was vomitting all the time from the medication and he just turned to me and said I give up if it wants me then it can have me and with that he pulled out the pick line, refused to see a doctor and cracked open a beer. For the first 4-6mths after drinking again he was happy. He would see his friends again and seemed to be in less pain and not as sick, so he thought. Then it all came crashing down to where we are today. It is just so awful and I am so scared and he just does not get that.

Thanks for letting me vent and Rick you and your wife should be very proud of where you are today and mentoring people on this sight at least you can help others which may help to realise maybe something good could come from such a battle, well done.

Krista
Posted 4/5/2011 12:19 PM (GMT 0)
Kriland,

     

      After reading the posts if he has stopped drinking there is hope there. I battled fluid retention for 6 or 7 months and I could not  wait to get a paracentisis! It is a big relief to get rid of the the excess fluid. The docs do not like doing them because of infections. I was curious about his bad experience? Was there an infection 18 months ago? From experience he probably has 30 to 35 lbs. of fluid, now. Thay would tap his stomach and take 5 or 6 liters which is a loss of about 10 to 12 lbs. and then repeat it a week or 2 later. Connie's right about the sodium even if he is drinking fluids and eating very little try to read the labels for the sodium content. Otherwise more sodium causes more fluid retention which causes more problems. If you just started the diuretics again, sometimes it takes awhile for them to work. I'm not sure if they have memory but in my case they took a long time to work for me. I hope he sees the light and seeks medical attention ASAP. BostonMike

Posted 4/5/2011 3:19 PM (GMT 0)
Krista,

Your story is the worse possible one imaginable and I have total understanding of how a devastating blow (understatement) can lead to drinking.

I too am the worse patient on the planet. I refuse to go to the doctors for various reasons. Fear, Uncertainty, Family connections. I was a very very heavy drinker and 100% certainly have severe liver damage - I have the symptoms - they are only just on the border of being debilitating from time to time (such as the fatigue).

I am writing here to you because when all else fails - if I am lucky enough to have someone care about me enough and phone an ambulance should I need it - due to massive ascites, not being able to come round, or maybe an internal bleed - then despite my stupidity in my reluctance to help myself beyond stopping drinking, I would be eternally grateful to whoever helped me out.

I dont think that person is around though - I am not sure.

What I am trying to say - is that you are possibly his lifeline. He may not really want to die - but maybe needs the push or help to survive. Its not your fault this situation - some would argue that its his own choice so let what will be - be.

It sounds as though his life is on the line..............right now.

Can you call in an ambulance - if nothing else - at least they will try and help.

I wanted to add - he hasnt been drinking for a week - this means a lot.

Post Edited (MrErythema) : 4/5/2011 9:42:40 AM (GMT-6)

Posted 4/5/2011 4:39 PM (GMT 0)
thinking about you today Kirsta.

i always called my hubby the "king of fun". we were both so ignorant about liver disease...who knew?...there are only the most subtle of signs that health is starting to fail...thought it would be like a heart attack...boom, you're done...had no idea how horrible it is...until his eyes turned yellow...then i started reading...and reading...and reading...so scared i was constantly feeling like i would faint or vomit...took all my strength to make it through the work day...i would go home and cry...and be angry...at him, at myself, at the world. how could we be so foolish?...so arrogant...to take good health for granted?...how stupid could we be?

that was over 6 months ago. i am still scared. but i have learned so much. so has hubby. learned new ways of coping and behaving. learning to socialize and celebrate and deal with stress and live without alcohol. hubby's health has improved. last night he said he feels "perfect." this makes my heart sing. with no alcohol...there is always hope.

like Rick's wife, while my hubby was sleeping through his detox, i poured all the liquor down the drain. threw away the cocktail glasses. gave away a couple of cases of wine. stocked up on ensure, soda and grape juice. i am even thinking about selling off all our wedding crystal. when we have family or friends over, we let them know that we do not purchase or serve alcohol in our home.

take care of yourself and be well. continue to be strong. prayers to you.

emma
Posted 4/5/2011 7:42 PM (GMT 0)
Dry drunk walking...
Posted 4/5/2011 9:48 PM (GMT 0)
David, not Emma's guy.  He has had 6 mos. of alcohol counseling and has changed considerably from what she's posted.

Emma, you've come a long way, lady.

Hugs,

Connie

Posted 4/6/2011 3:13 AM (GMT 0)
I was speaking about another (mystery) poster, not Emma's guy.
Posted 4/6/2011 3:57 AM (GMT 0)

That's what I thought, David, but wanted to clarify.

Hugs,

Connie

Posted 4/6/2011 12:15 PM (GMT 0)
Thankyou everyone, I love having time out to touch base with you all on here.

Mr E - see this is my problem, I am so tired of trying to save him when he won't save himself. He has never drank under 22 - 27 beers a day in the last 12 years I have been with him and I have tried and tried. I have given up my world for hm and still he continues. We have 2 children that need there Dad and that still isn't enough. I'm so tried of fighting "just one more time" When will he fight for me ....
Posted 4/6/2011 7:35 PM (GMT 0)
Krista - Im sure you have tried and tried and tried. My wife is probably the same in the way she tried to stop me drinking.

Nothing matters in life (much) other than getting drunk. An alcoholic/substance abuser loses - without realising it - a sense of reality. That doesnt mean he or she drifts about in la la land all spaced out in between fixes - rather we lose a sense of HOW MUCH things MATTER.

For example - now that I am sober for so long - I can see that simple things like cleaning my car MATTER. When I was a drunk - it didnt matter to ME if the car was filthy - and I never even considered what other people might think of it inside. Now it matters because I can see. This is one of a thousand things.

The deeper you go into the booze - more and more things become worthless and dont matter.

The house payments, work, friendships, marriage, kids - they all get less and less thought time and simply dont matter.

Eventually - your own life doesnt matter.

I call this rock rock bottom. There is no lower. Rock bottom for some is losing their home or marriage - but when losing your own life is involved - its the end of the line - rock rock bottom - there is no deeper pit.

I fear your guy is there already - at rock rock bottom. I am fully aware that I am missing the complete picture and may be off the mark here. But if I am right - your guy will really only be able to pick up from this point - any earlier point may never have been possible. This is his rock bottom. There is sadly - and I mean very sadly - nowhere else to go.

This is all or nothing really - he may well fight for you now - BECAUSE HIS BACK IS AGAINST THE WALL LIKE NEVER BEFORE - one last push with a call to an ambulance.

Of course - you know the details - I do not - and what Im saying here may not fit your picture.

Yours and your guys story is a terrible one.
Posted 4/7/2011 1:15 PM (GMT 0)
Krista..... get off this man's pity pot.... and start thinking more clearly... he has you sucked into this slow death march with no options for you... or the kids... way back a few posts ago... you said it yourself.... you could have him treated.... but he wouldn't forgive you.... so what if he doesn't forgive you... if it gives him a chance... so what... he is putting you in this position... this no win position to just sit and hope he dies...quickly or with dignity ... well you've read what the others have posted.... get with it... time is wasting... gather your bloomers up... get with some people who you can talk with reasonably... this just is not an option to continue on with no treatment and putting yourself and these kids through this... my guy isn't dead a year....he had slipped with his sobriety and until I got a backbone and laid down the ultimatum... he was headed for a nasty death down some stairs... he returned from a drunk with bruises from head to toe... this forum gave me the courage to confront him... while he's not here.... we had the dignity of our walk together towards the end... he had quality of life... and his death was easier than it would have been falling down stairs or dying in an alley... but it took me to stand up and say.... no more... you will be sober or you will be alone... you will do this... he was not competent to be making those decisions... especially the depression takes over... their decisionmaking... Mike could not envision a life that was not Mr Stud... He could not see the future...take back your man... take back your life... and refuse to take no.... oh how hard that it is... listen I met Mike working concrete and construction... he was the hottest man out there... took the breath right out of my body... and still does thinking of him... but I had to find the courage to stand up to him... and tell him no.... no .... no... for him and for the quality of life .... and while he is not still here.... his memory is... and I would not trade the quality of life we had that last year for anything...for loving him wasnt about how hot he was .... it was about how he moved my heart... and still does...as his body failed... our hearts did not... but I had to find the courage to confront his stubborness... the courage to walk beside him... feeling alone... but helping him and forcing him to make healthier choices... for your kids... for yourself... for your man.... say no... and figure out better options... my prayers are with you and your family today ... Sandi
Posted 4/7/2011 2:56 PM (GMT 0)
Sandi-your words are always so touching...thank you for always sharing. Your posts help more than just the person they are addressed to.

Emma
Posted 4/7/2011 3:59 PM (GMT 0)
Hi Sandi,
You are so right on. Tough love is still love.
Posted 4/7/2011 5:47 PM (GMT 0)
It's hard to come out from behind your man's shadow... especially these tough macho guys... it's tough to take on a biker type guy... but if you're every much the lady he chose... and we are... we take it on... and do the best we can... not all are this way... but accepting a disability is difficult for anyone... but Lord almighty... that tough macho guy... in the darkest moments in his travels on this path... I stood by him as he confronted the wreckage of his lifestyle and the too late attempt to pull out of the nose dive ESLD brought him to.... and in dignity... we .... and I mean we came to an acceptance... and walked together... but it was always a struggle to help him to remain in charge... and to continue to empower him to feel as though he did have some choices yet...we came a long ways from those days out there working construction together...but we came together... it takes determination and a vision beyond macho man's big ego and mouth... to understand that he is not competent to be making decisions... and he has no clue what he talking about when he's being so black and white... and refusing treatment... and in the end... probably does want to live... even though he says stuff about not... that's the depression sinking in.... go get it girl.... love him like you never did before... have the courage to back up... think and say NO.... that's not a good idea... and put it forcefully if you have to... time's a wasting... Sandi
Posted 4/8/2011 10:55 AM (GMT 0)
Sandi thankyou for sharing your story and your courage. I have told him tonight that he has to fight, that what he is asking from us is to much, he said that he was sorry that he didn't mean to cause this pain but he is tried and just can't fight anymore. He explained that he never wanted to let me or the kids down but after having Liver Disease for the past 3 years he is done with it and just can't handle the thought of having more tests, being drained again, etc etc. His stomach and feet are huge and red/purple colour. His feet look like they are going to burst! He is complaining of not being able to brath properly tonight. He hasn't been drinking for the past couple of weeks but it hasn't really changed anything. I called the doctor this afternoon and his latest blood results were shocking, the doctor said even if he did goto the hospital it is proberbly to late for them to do anything, that ESLD has progressed so quickly that all they would now be able to do is make him comfortable and send him home. Maybe this is all me, maybe I am the one not accepting things, I don't know I just wish I could turn the clock back I suppose and maybe if I was stronger back then, then we wouldn't be hear today. You are a very strong woman Sandi, your husband would be so proud. Can I ask did you care for him at home or did he go into a hospice situation? Sorry you don't have to answer if it is to personal.

Thankyou everyone again for your input and advice
Krista
Posted 4/8/2011 11:35 AM (GMT 0)
(((Krista))), Don't take this on as your fault. It's not. The blame lies strictly at his door. Don't let the what ifs and if onlys take you down.
Walk with your head held high. He's gotten himself to this point and you are still with him. Many wouldn't have made it this far under the same circumstances.
All your feelings of anger and sadness are normal. Each one of us walks through this journey in the best way that we can. Watching your loved one die is not easy for anyone. The emotional price a person pays is high.

Are you taking any me time........Even just for a few minutes.....take a walk.....read a magazine.......take a bubble bath.......do something that you love and will calm you down. You need to take care of yourself too during this time.

Lot's of thoughts and prayers.........
Posted 4/8/2011 4:17 PM (GMT 0)
Oh girl... don't blame yourself... and truly... he is confused... but that bottle is not going to help things... if you read between the lines... Mike and I came to an acceptance.... of his choices... not mine... but that I would not stand by and watch him kill himself... I took care of Mike at home... actually he was pretty stabilized after the "ultimatum" ... it was pneumonia... from "smoking" like a banshee... he moderated the smoking until the month before he died and the anxiety got to him.... this was March of last year...however I went through the war zones with Mike prior to his TIPs operation which stabilized him for years until... his daughter was murdered and well he drank... drank is a mild word for... falling down drunk...falling down stairs... falling through a window... bruised from head to toe... with so called friends who had the guts to say I wasnt taking care of him right... this tiger girl found her voice.... I was there with the blood stained and vomit drenched bedroom and bathroom walls... I was there when my "hot" guy lost control of bowel and bladder and weeped for it to end.... and I was also there when he regained his sobriety and dignity... to walk the end of his journey with self respect.... and that was due to the words... from the tough nuts here... David and Rick... who I hated so many times for speaking the truth... and in the end gave me the precious gift of friendship...and companionship through the end of the trail with Mike...flat out Im not saint... and Mike certainly was not a person to put on a pedestal..... God brought us together... and kept us... however we had to listen to the tools that He gave us and that being this forum..Mike did find fellowship at AA in the final months also...his death was quick...that was merciful... but very swift and so final for me....overwhelming...he spoke to me right up to the last second.... I lost my best friend... the love of my life.. but I regained my trust and my walk with the Lord.. for He guided us... through... Im working in a juvenile center now with boys/girls with chemical addiction/alchohol addictions... the wheel has come full circle... and I see lots of little Mikes... and I smile for the chance to make a difference...
No one has the answer for you... breathe... love him... your kids... but center yourself to make those tough decisions...having medical help.. even if he's choosing to have no "treatment" can help... with pain killers etc... this disease is not normally as merciful as Mike had it in the end...as he and I experienced prior to the TIPs operation... get all the help you can... quickly... Sandi my email is in my profile and I am open to questions at any time..
Posted 4/8/2011 5:45 PM (GMT 0)
Sandi,
You write the best stuff here. Tough, yet sympathetic.
Posted 4/8/2011 6:04 PM (GMT 0)
Its a learning process the key is to share the lessons learned to spare others some of the painful path. Truth. Honesty. Brutal honesty is the best gift we can give. For if one person pulls back and reclaims his or her life or if one persons life is better.......its worth doing. Sandi
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