Morning....I usually use a different forum and wanted to write what i am about to write,but wanted to make sure it went to the right forum so typed in liver and this came up, doesnt seem to be as caotic as the other one,anyway i hope its ok to post in here.
So short story so far.
My hubby has been a heavy drinker for over 30 years,and i mean heavy, largers,vodkas,whiskey. As times gone on he cant seem to be able to drink as much but still drinking. His drs one min are saying his liver is fine and then they are saying hes got cirrhosis ,then they are saying he doesnt, hes has had many hospital admissions, if its not because of vommiting its because of his swollen legs etc and many other symptoms. Thats been going on for years.
So the last few months , i noticed a massive change in him and his health, Hes sleeping alot, he can sleep for 15 hours straight, he will then be up for say 5 hours and then hes tired again. His legs are swollen,his belly is like hes 5/6 months pregnant, his memory is so bad he cant work out how to get his messages on a phone, up until a few months ago hes been able to read his texts. He gets confused, I have to explain simple things to him a few times before he will understand. When he needs to go for a wee, he will stand for 5 mins or more before he is able to go, or sometimes he just gives up. I spoke to him the other day about having a blood test done..He agreed, So i rung the drs yesterday morning and explained what had been happening and the dr said sounds like his liver is either close to packing up or its packed up , so ill send him to the hospital to have the blood tests done and if they need to do drainage they can do it in the hospital..
So we got in the hospital at 1 pm , i wasnt allowed on the ward ,so left him there, he was back home by 3,30 because they told him his bloods are all normal, his liver is ok, and his lung has some fluid(which hes had for a few years). A friend said that maybe he was lieing about what the hospital said but he came home too bubbly to be hiding any thing. (He had drunk half a bottle of whiskey before he went to the hospital to calm his nerves ,so he said thats why he was drinking it)..
I dont get it, has anyone else been through this ,or had normal bloods back but has cirrhosis? Im just so confused..I mean its great if his liver is ok and hes healthy but i dont understand how he can be with all the drinking , the confusion, the pains in his legs, swelling in his legs,hands. belly.
They are trying to say the reason for his sleeping a lot is because he isnt getting out and getting exercise. ...One confused wife..
Thank you for reading...
Written by
lyn3
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Hello Lyn3, I used to belong to another site too. Had similar reasons for moving to this one. All the same this is a much quieter site. But focussed on what matters.
Personally my transplant was last year and had little to do with your husbands issues. So I personally am unable to offer advice on that subject. However what I would like to do is give you a huge welcome 🙏 you will find people on here who will be more able to help you and maybe advise you through their experiences. So stay strong, Lyn what I can see is that you are in a dark place full of fear and worry. Your husband I think should not be drinking at all if he has a liver condition. Not at all !!!
Sadly a good deal of people who drink to excess generally are very good to find reasons to carry on drinking. That is in itself such a hard thing for you to cope with. Let alone, the fact the things certainly do not seem to add up ?
I feel you need support as much as your husband through this terribly confusing time. To be at your wits end worrying all the time. What is true what is not is not a nice place.
I send huge virtual hugs 🤗 and lots of love 💕 to hold you until someone with more knowledge come to the rescue here.
If he drank half a bottle of whisky before the hospital appointment, it would definitely have flagged up in the blood test.
The doctor who you spoke with about his liver struggling, sounds correct. Basically his liver can no longer tolerate or process any more alcohol and he needs to seek medical care. I think that your friend is correct in that he is not being truthful about the situation.
Can you speak to either his GP or the doctors at the hospital and find out what exactly they said?
The symptoms that you describe are certainly sounding like his liver. I would definitely insist on going to the future appointments with him.
The drainage itself is a much longer procedure and even getting the blood tests done so quickly sounds unlikely.
I wish you every success in dealing with what sounds like a difficult time.
Welcome to this rather quiet site Lyn. I'm sorry to hear of your husbands issues. I hope I can offer you some help and support. I hope you don't mind, I'll send you a private message if that would be alright.
I'm no longer a member of the other website you refer to and left as I felt the site was going in a wrong direction. However,
AyrshireK and I have been friends now for a few years now and I have always found her to be a very knowledgeable, sincere lady. She is very supportive and helpful.
I shall take a look over at that other site, and read up on some of your other posts and threads. Just to give me a fuller picture of what has been going on. I agree with what Mark has just posted up. Mark too has a wealth of experience of Alcohol-related liver disease.
Sadly, it sounds like you've only your hubbies word for what was said during his recent visit to hospital and also sadly heavy drinkers/addicts are not adverse to a bit of mis-reporting what they are told. I wonder if he actually even saw a doctor during this visit to hospital or had the tests he's commented on. If he was already under the influence when he went in there is a chance they didn't give him the care he needed - I know having supported mental health patients who when under the influence of substances wouldn't be given the time of day by doctors.
Whilst you can have normal bloods with advanced cirrhosis - bloods are usually deranged though when the cirrhosis is decompensated - which is the state when you have ascites, oedema and advanced HE symptoms (which can present as sleeping as you report and the confusion etc.).
If he is under a specialist then at his next appointment you need to get him to allow you to go along so you both hear what is being said. If he won't let you then it might point to the less than honest behaviour that some addicts present. Even with covid, where a patient requires help from a carer or family member they should be able to attend. My hubby has an ultrasound scan this coming Friday and I will need to accompany him (at least to the waiting room) because due to minor HE he struggles to navigate round the hospital.
Hi Katie,, thank you so much for your reply, i can confirm that hubby wasnt lieing about the tests and wasnt lieing about anything to do with his short stay in the hospital.
I wrote a letter to the dr who i spoke to who wanted hubby admitted ,with my concerns about the test results, about how theres no change, and i wasnt sure if hubby was lieing about it all, and the dr got back to me and said he wanted to see hubby to talk to him about the hospital and hows he feeling etc and to examine him.
He attended the drs yesterday i wasnt allowed in the building , so had to wait outside.(they know i have always gone in the drs room with him (hubby always insisted i was with him because he knew he wouldnt remember it all ), the nurse who answered the door to the hospital ward point blank refused to let me go on the ward with him, she was quite rude about it. She didnt asked me for my number as im his next of kin, i had to ask her if she would take it.
Anyway he went into the see the dr and the dr checked him over, he said his liver is enlarged and hard, so hubby asked why 2 different drs in the hospital had said all felt fine and yet he said what he did? and why did the bloods come back normal? (i knew the tests results because the dr told me over the phone they had come back normal,and then explained to me why they would have come back normal)..So the Dr checked the report from the hospital and he wasnt impressed that they had confirmed that on examination of patients abodomine ,liver area, there were no signs of damage, that they hadnt done deep blood checks on the liver and a scan of the liver. His very words were ,its a good job your wife had the sense to write to me with her concerns,other wise we would never had known.
So hes arranged for him to have more bloods done tommorow and after the bloods come back ,to arrange to have a scan done. Such a massive relief to finally have a dr that agrees there is something wrong. Hubby has said that he wants to change, that this is a wake up call for him, but we will see, hes said time and time again he will stop, but hes never been told his liver is really bad before, so who knows. But unfortunatly it maybe too late , but will see after the bloods and scan is done. Ill keep you updated.
He was under the liver specialist before (only seen him twice) and then discharged him because he said his liver is ok, even though he said he was showing signs of cirrhosis and that was over 2 years ago. I will be going with him to the scan and all his appointments because i will be saying how he forgets things and gets confused a lot. He wants me with him in the appointments.
Hope your hubbys scan goes ok..Good hearing from you..
Hi Lyn, glad you pushed to get hubby the care he needs (i've had to do that all along for my hubby) and also very glad that your hubby was reporting back accurately what he was told even if what he was told was b*ll*cks and wrong. Glad you've now got a doctor very much on side and getting the appropriate tests sorted out.
That was ridiculous that you weren't allowed to accompany your hubby to his consultation - I hope I don't get the same treatment next week when I will be accompanying my hubby to his endoscopy appointment and consultation in Edinburgh. His consultant is well aware that hubby can't comprehend or communicate information well so always has to have support ....... I guess time will tell.
Hubby had his ultrasound scan on Friday - no results back yet then yesterday we got a phone call from Edinburgh booking him in for his delayed endoscopy.
Thank you, its so annoying and frustrating when they literly ignore how ill hubby is because of his drinking, i cant stand judgmental people who havent walked a mile in the persons shoes, any who...Interesting concerning this dr,, this dr told hubby his liver was fine about year and half ago, after hubby confronted him about a list of hubbys medical report the dr printed off ,to write some important numbers on the back (think it was the drs mistake) on there it stated he had cirrhosis in 2018 but the dr said it was an error and deleted it and printed him off a new piece without the cirrhosis on there,ive kept both papers), But im glad hes taking notice, proberly because of the letter i wrote, not sure but the main point now is he is pushing for hubby to have all these tests.
Yeah the nurse at the hospital was quiet rude about it all. The nurse who let hubby into the drs wouldnt let me in with him, hubby said the dr was supprised i wasnt with him in there. When he goes for a scan im going to say i need to be in there with him because of the way his brain works and cant contain information,Besides the fact that hubby wont think to ask any questions,will see.
When do you go for your husbands endoscopy appointment? Have you had the scan results back?
Is it cirrhosis your hubby has or did he have it and hes had a transplant, sorry brain fog..
Hi Lyn, in a former job I was a support worker for ladies who had various issues (criminal justice etc.) I had one lady in particular who one day really, really needed mental health support, she was crying her eyes out, literally pulling lumps of her own hair out. I telephoned her GP and tried to get her some help but because she'd downed half a bottle of something that morning they wouldn't do anything. It was awful, never felt so helpless in all my life. I imagine this scenario had kicked in the day your hubby was in and out of hospital with little help.
Glad your hubbies doctor is finally on the case, but, your hubby will need to put in the biggest effort to kick the booze into touch - if transplant becomes a necessity or possibility he'll need to have proven abstinence for at least 6 months and thereafter pledge lifelong sobriety. He needs to be having 6 monthly scans, 6 monthly bloods and monitored properly. Your hubby is entitled to a copy of his medical reports going back so if you think that will help clarify the situation you could ask.
Yes, it's my hubby who has cirrhosis, his due to auto-immune liver disease, t-total all his life so a massive shock when he was in A&E with decompensated symptoms in April 2012 when we never even knew he had anything going on. Listed for t/p in June 2014 but delisted the following year as his blood results improved thereby taking him out of the criteria for t/p. Far from well but also doing remarkably good compared to many with the condition - now stable and compensated.
We haven't had the report from the ultrasound yet (although hopefully it's been sent across to Edinburgh) and Edinburgh phoned this last week and we have to go over there next week for his endoscopy on Thursday 23rd. It's his consultant doing the scope so she usually does a full consultation with us at the same time. Hopefully, as she knows hubbies limitations with understanding and making himself understood I'll get let in for at least that bit. (Got our facemasks ready).
Keep on fighting for your hubby to get appropriate care but hubby has to do his part too. We've seen local patients not make it as they were never referred to the t/p unit - local consultant has said he wouldn't waste t/p unit time for someone who wasn't willing to play their part.
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