Hubby suggested we book a holiday to Tenerife, i said is that such a good idea because hes either sleeping a lot or in a lot of pain with his stomach and the other stuff that comes with a bad stomach but he reassured me it was a good idea to go away while he felt a little better, so the holiday was booked, was due to go to Gatwick for an 8 am flight in the morning and hubbys slept all day and night sat, he woke up this morning in agony with his stomach and been sleeping on and off all day, he struggled down stairs to tell me he feels so ill he just wants to sleep forever and told me he is way to ill to travel and went back to bed. One Dr says hes got Cirrhosis another dr says he hasnt, but he knows his own body and his words last week were my liver is fxxked. He sleeps a lot, his legs and feet are swollen , his belly is big, When he does feel well enough to get up which isnt often he looks aweful. Drs and Hospitals arent even questionable because he refuses to see them and refuses to go into an ambulance. Not sure why he was so adamant to go away ,and as much as i am disappointed ,his health is my main concern.Which i believe wont just be his physical health but his mental health now. Hope no one minds me putting this up, just wanted to share ..Thanx for reading..
Disappointed: Hubby suggested we book a... - British Liver Trust
Disappointed
Hi
Its not at all easy. I was the same as your husband at first and did not want to accept I was ill.
I went on working to long and carried and wanting to go on holiday to bring some normality back.
The best thing is to get him to a specialist ASAP and find the cause, once I got to that point and the journey began along with my realisation of how ill I was.
Then I understood the need for ambulances etc. Also how and why going on holiday has to wait until I got my health back.
A Liver can be controlled, fixed or replaced (In my case), but you have to get started on the road to recovery
Best wishes for the future
David
Thank you david for your reply, wished he would go or have someone come see him but he wont. He knows he is and deep down i think he knows how serious it is but think hes afraid of bad news..
Hi Lyn,
I have just made the decision not to go on holiday this year. Last year we went to Crete, and to be honest, it was a mistake for me, even though my wife enjoyed it.
I have F4 cirrhosis, and am in constant capsule pain, and the discomfort of having to do all the holiday stuff was way to much for me.
I decided that with the constant pain, home is the place to be, where I can keep to my routine of coping with the daily symptoms.
Your Hubby needs a firm diagnosis of his condition. I assume he has had all the tests...bloods, Ultrasound and fibroscan, as these, as a minimum, will give a concrete diagnosis. With all the symptoms you mentioned, is seems to me likely that he has, as I get these daily as well. He knows his own body, but was probably just trying to please you.
My wife is now going to Seattle on her own to see our Grandchildren, which I, unfortunately, can't do.
David
Hi David..
He had all the tests a couple of years ago and they all came back ok. But He was told he had a fatty liver, 6 months later he had another appointment and i asked how long it takes to go from fatty liver to cirrhosis if the person carrys on drinking,(hubby hated me asking because he didnt want them on his case) and the consultant said then he is showing signs of it already. That was the last time he went to the hospital. His dr last year printed off paper for him to give him useful numbers to call but it was printed on paper with his medical on the back, to which it stated back in 2018 he had cirrhosis, he confronted the dr to which he replied oh that was just a quiry and proceeded to print off another one but took the cirrhosis off, i have kept both papers, i asked a friend who works in the hospital and she said they usually write quiry then what they are quiring and then ticked confirm, i showed her the list and she said thats just wrong.....Hes not been to the drs since and refuses to go, the last time i called the dr out because he was so ill was so rude to me and baiscally told me i was wasting his time and he had far more seriously ill patients to see to.
Hes lost a few friends to liver problems and they have all died in hospital and he said he will never die surrounded by strangers in a hospital bed, i have tried so hard to get him into the hospital to have an over all checkup so at least we will have a proper diagnosis and he can have support and better pain relief, but he just shouts at me to leave him alone.
I have been checking on him on and off all day today and hes just lethargic and says hes not in as much pain. As the saying goes you can take a donkey to the water but you cant force him to drink.
Sorry to hear that your wife is going alone and you cant go..Hugss....
Lyn..
Hi Lyn,
That's bad that the Dr printed off info on the back of a query. It might be a report to PALS is in order, although the query was about him, and I wonder if the Dr did it to make him realise the severity of his illness. That said, no Dr should say "you are wasting my time" so I think PALS complaint is appropriate for that reason alone.
Does Hubby ever read others stories on here? If not, it might give him hope to know that others are in a similar position to him, and turning it around. He needs to know that there can be a good life after cirrhosis, if he does the right things. He really needs to stop drinking, if he hasn't already, and face up to his illness, then he can make progress. I won't pretend it's easy, but with the right attitude it's more than achievable.
Both you and your Hubby are in my thoughts and prayers, and that Hubby seeks all the help he can, possibly with a different Dr.
Take Care,
David
Hi David,
Yes it is bad and even worse that the dr gave him another print out the same day without the cirrhosis on there, so have kept the both pieces of paper for future referrences. I dont know if the drs did do it to make him aware of how serious it was because he confronted the dr saying you told me my liver was fine and the dr replied it is , hubby then said if its fine whats this and the dr said oh thats what the hospital queried. I said so in others words you havent a clue. Ive written down dates and times the dr said that and what was said word for word. Hubby isnt interested in reading about other people, i have said to him that they arent just stories they are real people, i introduced him to a guy who had the same and had the same good news story and hubby said he was never ill hes just making that up to make himself look good, basically he doesnt want to hear it.
He wont give up the drink , as il as what hes been , hes been drinking early hours this morning . He obviously waited till i went to bed and was sleeping because i only noticed with the empty bottles. I honestly think hes resided to just giving up on trying and just living one day at a time. Im here if he needs me but i also live a life outside the four walls, i do volunteer work and go out for coffees etc. You never know maybe a miracle will happen and hubby will say one day you know im going to give up the drink and try and live not exsist.But im not holding my breath.
Lyn..
Oh you Poor Girl Lyn,
I really feel for you in this tragedy. It seems he's just not ready to accept his illness yet, but, to be honest, I don't know what will make him see sense. My heart goes out to you for having to witness the demise of the person you love. I will pray for a miracle change in his mindset, and for you to have the strength to deal with your situation.
Please don't forget to look after yourself,
David
hi Lyn David's already given some top advice. The issue here is that if he continues drinking the prognosis is not good. He has to stop otherwise it's a one way ticket to be blunt. I've been on this forum seven years and we see the same thing..partners trying to get their other halves to stop. When it works-it's generally a good news story-not always. When it doesn't it's always a bad news story. Maybe the doctors thinking is if he wont quit then I'm wasting my time. He should still treat his patients though. I feel for you -really. Best wishes K
Thank you briccolone.
Don't be despondent Lyn relay the messages from the forum there is help out there if he helps himself . .one day at a time and all that. All my symptoms started when I stopped drinking - it gets worse before it gets better but within a few weeks things should improve ...take it from me
Hi ty,,, i showed him a few of the possitive outcomes and i wont repeat what he said but it wasnt very nice and now hes not impressed that i have shared things on here..So im done trying to help him..
Hi Lyn,
I dont want to overly worry you, but, if he is worse than normal, and with the symptoms you describe, some propper medical advice is needed, especially if he is reporting this is worse than usual.
With the oedema you describe there is a risk of an infection in the abdomen or legs that can turn out pretty serious if left. I'm not saying your husband has this, but, as a minimum a quick call to NHS 111 or your gp may be sensible.
It's worth taking his temp and pulse rate as this may be helpful info to have to hand when seeking advice. It may also be worth just checking if he is breathing faster than normal. High pulse rate and high breath rate will be important to mention if they are present, or not as hopefully the case will be.
Hopefully this wont be anything too serious. I also appreciate this may not be easy to do. But, from what you describe, seeking that medical opinion today if you can I think would be a very sensible move.
Hi thank you Kristian, i am keeping an eye on him all the time .(yes its exausting but im the only one he will let near him and even then sometimes he doesnt want me in the room and tells me to stop fussing..
I think in that case make yourself familiar with the symptoms of Sepsis just to be on the safe side. He probably wont develop that but it is all too common in people with compromised health and can develop really quickly.
If any 2 of those symptoms appear then he needs to go to A&E quickly. Even if you have to drag him there by his ear, lol.
Good luck and hope things get better soon.
Thank you all for answering i really appreciate it...Ill keep you all posted..
Hello Lyn,
What a terribly difficult situation for you. I do hope things have improved a little and that your husband has had a medical review.
Thankyou..
Hi I honestly think he is scared . Especially now days when you can google any symptom and the results can make you feel you have a death sentence. With my own experiences with myself and family mental health wether it be anxiety, fear, depression etc is so important. I know when I was first diagnosed I wanted to buy a shovel and start digging my own grave. It is scary. First you worry about what others think no matter the cause of your cirrhosis . Why can some people who drink or not even drink get cirrhosis. My own opinion comes down to genetics and being prone to certain diseases.
We all don’t want to be judged when we have to say we have cirrhosis, or it is written on a paper. But we are judged because of the word cirrhosis. The fear and anxiety of what society thinks can influence people seeking help. It is not easy explaining your own health issues to medical or non-medical people.
It is a lot to handle mentally and sometimes being able to talk with a therapist or someone trained in helping with anxiety depression can help with facing the unknown .
Hi Mary.. Thank you for your reply..He is very scared (hes not told me but why else would he not go to the drs, ? )..Alot are judged like you said when cirrhosis is mentioned and some just dont understand and are too quick to judge, i say walk a mile in that persons shoes first..
Oh Lyn, really, you and he have my every good wish. I was the same and confess I may still have been ignoring it now [no pain, just niggling symptoms most of which I blamed on menopause and weight loss] if hadn't been for having a muscle pain in my neck that had reached unbearable levels in December. I hate 'troubling' doctors, even though I knew for quite a while something was wrong and as a smoker [now smoke free since Boxing Day] instead of being a drinker, of course the fears of what it might be are made worse by that internal nag of 'its your own fault!'
I have no idea how you are going to persuade him to seek medical help, it must be so distressing for you watching him suffer and refusing to help himself. I really hope he can bring himself to deal with what are very real fears, even terrors, of finding out what is going on in his body, because what I do realise now, is that the reality of knowing is actually far less frightening than the dark thoughts that lurk in the head when you imagine what it might be.
Good luck, and keep posting, many people here will do their very best to support you both in whatever way is possible.
You guys must be sick of hearin from me.hope not though.Its nice knowing i can share on hubbys process.
