Another newbie here. My husband has always liked a drink but about four years ago he stopped drinking then about two years ago his estranged daughter contacted after a silence of ten years to inform him she had cancer, then proceeded to cut him off again. Well he started drinking again, heavily. Two months ago I was rushed into hospital and that was the final straw for him, I believe he had a breakdown. So after two weeks in hospital I cam home to a jaundiced husband who looked six months pregnant. I got him into hospital and we were told he had liver damage and cirrhosis. He has followed their instructions and taken the water tablets and thiamine and with a couple of weeks his is no longer yellow and his ascite have gone. No one has given us a prognosis I was told by a nurse his condition is life limiting but what does that mean? He is still waiting for a gastro appointment which we are taking as a good sign and that they are not too worried about him. He no longer drinks and ai think they thought he would have a problem butmwere surprised in hospital that he didn’t need extra help to not drink. Then one of the doctors thought they had concentrated on the alcohol side too much and ran further tests and found a historic case of hepatitis.
I suppose I am looking for some reassurance will he be able to be well enough to lead a normal life or is this as well he will be. I have followed the dieticians advice low salt all the way, healthy eating etc but our life has gone on hold, our holiday cancelled, we were going to move but now not knowing what his prognosis is we are unsure what to do. I am shell shocked with how life has been turned upside down. I was recovering from an emergency op and trying to get my husband the help he needed.
Sorry for the long post,
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Bs1524
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Please dont appologise, you have done very well just to get it all off your chest and I'm so sorry for the awful time you are going through.
The reason you have not been given a prognosis is because at the moment they just don't know. Your husbands condition may well stabilise with all the medication and the good healthy food you are giving him. The fact he has given up drinking is a massive bonus. He will be monitored regularly and if things start to deteriorate and the specialists feel it necessary, he may go on the transplant list if his liver is failing.
It must be a very worrying time for you both, but do try to make the most of every day and do as many of the little things that you enjoy doing together as you can.
Ask lots of questions when you see doctors and specialists. Jot down what you want to know in advance. The more you ask, the more they know you are interested and concerned and really will look after you. Which it sounds as though they are doing already, as are you both too.
You will get lots of love and support here so no need to feel isolated. Please let us know how things progress for you both.
Thank you so much for your response I think the biggest issue is we still have not got an appointment for the liver clinic and they are the ones with the answers. It scary, I understand that the damage was already there but for me I went into hospital and when ai came out I thought my husband was going to die he was so very ill.
You know the worst thing he doesn’t seem to realise how serious it is. To begin with he was so depressed he really didn’t care if he lived or died even when they thought he may have cancer. Now he wants to live and thanks me for what I did and he knows he brought it on himself but he seems content to sit in the house and doing nothing, He has started smoking again after over ten years not smoking. It hard not to be worried and I will be going back to work next week.
Thank you so much for your kind words, life feels very surreal right now.
You will come through this. It feels really hard and hopeless to you at the moment but you really will come through the other side. Life may be different but together you will adapt and things wont be as bad as they feel right now. Together you are strong xx
No one's going to judge especially because it appears he has hepititis without being aware of it. At least by giving up drinking its one less thing to have to deal with. There are positives here so focus on those. Things could be a lot worse even if right now it doesnt seem like it
Well I don't think you'll find that here, and remember you're under no obligation to discuss it with any nosey parkers! 😅He sounds scared, cirrhosis really makes you feel like s**t, so if you can, give him a few days before you toss the smokes! 😏 Maybe he can stay compensated for a while and he will start to feel better. If he still has hepatitis, they have a cure for it now. Let us know if you have any other questions. Take care. 😁
The Hepatitis E was years ago they haven’t said if he still has it or if it lay dormant. The testing for other causes was an afterthought as they had focussed only on his drinking. Alcohol has definitely played a part in this he drank every day and at weekends he would have three or four bottles of wine. I wish he would get the appointment to attend the clinic so we can find out more. His GP said that there isn’t really anything else the clinic could do as he is doing everything already. He didn’t seem to appreciate the need for some clarification. Will scans and mris give a definite diagnosis of cirrhosis?
I don't pretend to know how difficult it is to give up drinking, and know nothing about Hepatitis E. I didn't pick up on that at first, he has antibodies but not the live virus? It doesn't matter, the specialist will know what to do about both. Scans and MRIs are tools used to help make a definite diagnosis. If he has cirrhosis, he will be getting scans every six months. Of course, a physical exam, medical history and blood tests are also required to diagnose his problem. The doctor will order lots of tests and his symptoms will be controlled, and hopefully, others prevented, with medications and vitamins. The waiting is difficult. Best of luck!
On here he won’t be judged for his past drinking because a lot of us here (not all of course) have been through that frightening stage as well. So please don’t worry about that aspect! Lots of people have already made sensible feedback and I cannot add to that but do also wish you both the best of luck.
Miles
Hi BS1524
Firstly welcome to this amazing team of wonderful understanding people!
I personally cannot add much more than what Laura and Boots have akready written, but please be assured we"re all here to help and not to criticise anything.
It's great news that your hubby's now eating healthy but you must also take care of your self too!
Thanks Slaines1952 he is only managing a meal in the evening during the day he is having some fruit and yoghurt and the GP has prescribed protein shakes. He got the shakes and couldn’t sleep so they prescribed sleeping tablets. I got him to take the lactulose and senna and I think we may be getting the better of the toxins. I am confused about the ascites as one doctor said that they wouldn’t go away but they have.
1524 - Protein drinks are great for you and taste fab as well!- Fortisip? - I was prescribed 4 bottles a day - lovely. But sleeping tablets - oh my - they made me feel terrible the next day on top of the terribleness already! Had to stop those and endure the lack of sleep - it was preferable! But we are all different so I hope they do him good. Stating the obvious I guess - but sleep does helps even if not greatly.
Shakes are not unusual when you have liver issues, the Consultants always made me put out my arms and they looked for the tremors (NOT DTs but just tremors!). They still did it for months after my TP.
Thank you all for you understanding and advice and the warm welcome. I really didn’t think my husband was going to come out of hospital alive. They saw ent him home in a taxi with no warning or advice for me to help him. I thought the life limiting comment meant he wasn’t long for this world and they had sent him home to die.
Yoiks. That was incredibly insensitive, and I can't think why the nurse felt the need to make that sort of comment, except to say that he was in serious shape.
All sounds very difficult for you especially so soon as your operation. Have you recovered ok?
When was your husband discharged from hospital and has he had a follow up since then?
Also did you receive notes from the hospital or a letter copied to your GP?
I think if you can review with a consultant you will have a better understanding of what life will be like so perhaps push for that follow up appointment.
Well he had an appointment for the ambulatory clinic because they forgot to do a chest X-ray before discharging him. That was when they thought about doing further blood tests as they had solely concentrated on alcohol. They referred my husband to the liver clinic and we are still waiting for that appointment. The discharge notes said problem/diagnosis alcoholic liver disease, ascites cirrhosis, left pleural effusion. Outpatient follow up - no planned follow up. Then another note for go I guess please refer to appropriate services. I am guessing again this is Addaction my husband did call them but at that point neither of us could drive and they couldn’t send anyone out. As we were called back for the X-ray that is when they referred him to them liver clinic or gastro as they called it., and so we wait. I forgot to say he was discharged on 17th May. Notes do say he will be seen by gastroenterology team.
- it is usually a short 'bug' rather than a long lasting illness.
The smoking isn't going to do hubby any good and if he goes on to fulfill criteria for transplant assessment in the future his lungs need to be in really good condition - smoking can actually get you knocked back for t/p.
Hope you get that clinic appointment soon - if the wait goes on too long get your GP to chase it up or do so yourself.
We are seeing his GP on Monday I will see if he will find out where we are on the list. Does anyone know about travel and flying? I postponed our holiday for Sept 2020 as obviously hubby not well enough to travel, but are there any restrictions?
Travel with advanced cirrhosis can be impacted by available insurance - what if he requires medical care abroad? Also, when flying is involved he'll probably need an endoscopy to check for varices in advance of any flight (especially anything long haul) - there is an increased risk of bleeding. Other things to consider will be any necessary inoculations needed for travel plus food an drink abroad.
This would be a discussion you need to have with hubbies specialists prior to considering foreign travel.
Thanks for the information, the only symptoms I do not say only lightly has been jaundice and ascites both of which have gone now. I have spoken to one of the counsellors here and we think rather then alcohol dependent it was a habit as he has had no problems not drinking. When we finally get an appointment at the clinic I will ask specifically about travel. We should have been flying out to Jamaica again for our wedding anniversary in September so I do hope we can look forward to going next September instead.
Hi if it is very bad he will get a transplant after that he will be back to normal, if it is not that bad as long as he does what he is told no alcohol diet maybe tablets he should be fine any problems any worsening get to hospital see if you can get in to one of the liver specialist transplant hospitals they will give you a ful prognosis
And do not worry about the length of you message lots on here are longer
Thanks for replying I am still getting my head round what has happened. The hospital didn’t see the need to explain anything so I immediately assumed the worst.
Yew I know what hospitals can be like that is why you need to go to a liver hospital they are dotted over the country
I can understand about getting your head around it, it was my wife who had a liver transplant and I think it was harder for me than it was for her
Keep your head up get a full prognosis so you know where you are and that will help to relax both of you
Dave
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Its fantastic that he has been able to stop drinking and he is not looking like he will start again. He is lucky to have such a supportive wife too. If you are post op and it was an emergency then ensure you are taking good care of yourself as well. It can be complex getting a diagnosis, it is a big jigsaw. Concentrate on both of you being supportive of each other. Avoid Dr Google, stick to nhs site and members are all here to support you. The Trust is reputable and you can ring them with any queries. Take care and do not give a monkeys about other people's opinions especially about alcohol. Liver disease is not exclusive to alcohol, obesity is a major concern, due to our western diet of fats food. The waiting is difficult, but the liver is a complex organ. so diagnosis is complex. Hazelxx
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