My husband was diagnosed with Cirrhosis on 20th November caused bu alcohol. Just been re-admitted tonight with deranged bloods and ascites

[megan1]

He never considered himself to be a big drinker as he just drank beer but the damage has been done. He has not touched alcohol since diagnosis. Tonight he looks dreadful jaundiced abdomen distended and legs and ankles starting to swell again.and we are both so worried I am trying to be strong for him but it is very hard I hated leaving him in hospital tonight as he is very scared. His weight loss is really bad. Should we be pushing for a transplant or am I just being over anxious. We are both very frightened for the future. Has anyone else ever been in this place and do you ever get out of it.

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[Macca2013]

So sorry to hear this. This has now made me think hard and I am going to stop drinking . I hope your Husband is getting better and wish him luck. He is in my prayers this very second.

[megan1 in reply to Macca2013]

Thank you for your support

[JoJo]

Hi Megan

Sorry you are having such a worrying time at the moment.

Is this your husbands first episode of ascites or has it recurred? Also, after he was diagnosed was he put on any medication or advised to follow a low salt diet?

I am an alcoholic, diagnosed in April. Ascites was drained in hospital. I was jaundiced and so thin apart from my distended stomach. I was sent home with painkillers and no advice. I was re-admitted some weeks later. More ascites, bloods all over the place.

I was put on Spironolactone, Furosemede, potassium tablets and strong vitamin B. I saw a dietician who explained the importance of a low salt diet. I followed that advice once discharged and continued to take the diuretics. Slowly, very slowly, my ascites did go away.

I have not drank alcohol since I was diagnosed in April. I have put 1.5 stone on but I am still thin (Uk size 8). I no longer take any medication apart from vitamin B and I am very strict on what I eat.

So yes I have been in that place and thankfully, for now, I am getting out of it.

Some on here have managed and lived with cirrhosis for years. Others have needed a transplant. Speak to the doctors and consultants about your husbands prognosis. You are not being over anxious. This is a serious condition.

I will be thinking of you both today and have my fingers crossed. Good luck.

JoJo x

[megan1 in reply to JoJo]

Thank you Jo-Jo, Your support is very much appreciated. He wasn't drained when he was in hospital they tried too but he became distressed. He was sent home on a lot of medication Spironolactone,Furosemede vitimians and a few more. The plan was to bring him back in drain it. like everything else reallity only hits when you get home. He was doing very well but then the fluid got worse. They are going to put a drain ioevern today hopefully and take it from there. He hasnt touched a drop of alcohol since diagnosis so maybe things will improve. At the moment he has no strength whatsoever and it is heartbreaking to watch. The attitude of some people has really annoyed him you would think to hear them he an out and out alcoholic some of them should look at their own drinking. My Grandmother always said never critisie others until you walk a mile in their shoes. I will let you know what happens.

[JoJo in reply to megan1]

Thanks for the details.

I often wonder if cancer patients who have smoked at treated with the level of disgust that seems to be reserved for those of us that are ill through drinking.

Anyhow..I hope today goes well and your husband feels better. I was so weak I couldn't climb the stairs, now I can jog up them. There is hope. Xx

[megan1 in reply to JoJo]

Thank you

[blakeybabs in reply to JoJo]

Hi jojo x

u sound identical to me x I'm 38 an was diagnosis in August, I too on same medication an had all the same treatment, I too am thin feel weak I see my consultant every two months but what is the seriousness of this I wasn't told about trasplant I had a biospsydr waiting. for results?

[Hidden]

I am sorry and understand all to well what its like, being in the same place 4 years ago.

But no alcohol and regular small meals slowly things got better, I was on the transplant list but during the wait I have become borderline as to whether I need it.

Take each day as it comes, any small improvement will build up, if I can help with how it effected me or my wife, contact me on [e-mail]

I can at least prove that improvements can happen as I am still here!

[megan1 in reply to Hidden]

Thank you for your support. it is great to hear from people that have been there. You are right one day at a time. Maybe after today things will improve

Many Thanks

[Cheryllong in reply to Hidden]

David, hope you are doing well. My husband was diagnosed in July with cirrhosis, has not drank since then. He is on lactulose, and has fits of rage. I assume it’s HE. He is also a type 2 insulin dependent diabetic.No word of transplant yet as he is “compensated” per Dr. He complains constantly of bone pain. I’m worried.

[Hidden in reply to Cheryllong]

HI

Don't try and worry, I am on the transplants list and still get minor HE attacks, my wife has told me that I get very stroppy when having and attack, I usually cannot remember a thing.

It is all very exhausting I am type 2 diabetic which can cause rage as well.

Keep the lactose high as its keeps me HE clear although I hate taking it

I am hoping to remember this Christmas, Two of them I went into HE black out.

My thoughts are with you its a long hard road for any carer

David

[Lingeriek in reply to Cheryllong]

Hi. Im going thru same thing with my fiance..can you tell me what is HE ?..he wont talk about his cirrhosis.. Or Let me ..wont see no more doctors..i need to communicate

[Gordon99 in reply to Lingeriek]

I’ve had similar symptoms. The HE I had was hepatic encephalitis which is caused by a build up of toxins since your liver is not dealing with them as it should. In my case I would have intervals where I would do strange things and slurred a little. It was like being on acid or other psychotropic drugs. I worked at reducing my intake of toxins by changing my diet. My medical team prescribed Rifaximin and this really helped. I eventually had a transplant. Keep your doctors up to date, there really is no other way to my thinking.

[ancientadolescent]

I have been there and come out the other side. I was fortunate to receive the gift of a transplant just over a year ago and am now a member of society again. Both my wife and I understand how you feel and we are right behind you.You should certainly push hard for a transplant and do not be diverted. Replacement livers are in short supply and I always pass this message: encourage family,friends and aquaintances to join the transplant list. I wish you both the best of luck in your quest.

[anne-marie50]

I'm sorry to hear about your husband but I understand those symptoms very well. That was me over 4yrs ago and I too stopped drinking straight away. Everybodys symptoms effect their body differently. I went on like this for several years but I was put under the care of a liver specialist which from what you have said seems to be what your husband needs if he's not been referred to one already. The specialist will put him on the right medication he needs will have scans, regular blood tests and may even suggest a camera down his throat (sorry I can't remember the actual name of this). It is very important that he eats the right healthy foods though small amounts regularly, he must not have salt. He needs to drink regular non alcoholic drinks I.e water, tea but not sugary drinks. You mention pushing for a transplant but unfortunately it doesn't work like that. The most important thing is that he is being monitored by a liver specialist and if they see from all the results of the tests they have done that a transplant is his only option then he will be assessed for the transplant. I was able to continue a fairly normal life for 3yrs on the medication & support from my G.P, the liver doctors and a dietician but because my liver couldn't repair itself to a stable stage I was put on the transplant list. My family was told I only had 12months to live without it. After a phone call in the early hours twice which followed by false alarms as the liver was not suitable for my body I finally got my new liver in February this year It is a wonderful feeling but its a long process to being me again. I haven't been able to work for 3yrs because of this illness, the last year because I'm recovering from the transplant and there isn't much support out there financially but the most important thing is getting your husband well again. All this will be tough on you and I hope you have the support around you to help you get through this. I'm sorry if all this sounds quite depressing but this is how it was for me and everybody has a different case/care plan as were all different. I am a success case and I'm hoping to go back to work spring time in the new year. I have started to feel like I'm a new person again & have started to go to the gym to build up my strength & when the warmer weather is here I will start swimming. Im on medication for life and I have to be careful of certain foods etc, take care of myself and never drink alcohol again but I'm alive and at 52 I intend to enjoy life with my husband & family. I wish your husband all the very best for the future and I hope you take care of yourself also as all this can take its toll on you too. All the very best wishes to you both now and for the future. xxxx

[Hidden in reply to anne-marie50]

What wise words! My thoughts go out to you Megan

[berties]

My heart goes out to you both Megan. You must be feeling very alone and confused.

I was in a very similar place exactly one year ago today. He was taken to a&e with internal bleeding due to NASH. He ended up in a medically induced coma for 2 months. During this time he went through hell without knowing. He had a tipps stent. Thats a liver bypass which resulted in brain toxins building up. When they brought him back round he had lost 35 kgs in weight. That was when they first mentioned a liver transplant. I was so scared I dont quite know how I coped but I did.

He was assessed fot the transplant over a week. He fought every step of the way. I never knew he had such determination. Then they sent him home. My life flashed in front of me. He was like a confused old man. Didnt know what was going on due to toxins building up.

We were put in the transplant list. Two and a half short weeks later we got the call and raced to Addenbrooks.

He had a complete new liver in March and hasnt looked back since. This year we have had the best Christmas ever. Although I am feelng nervous today (1 year anniversary of our visit to hell) I am so glad we pushed on and faced everything that was thrown at us.

So here is my advice to you. Be honest with yourself. Speak to your consultant. Ask questions. Discuss answers so that you understand the solution and risks. Make the medical team understand that they see this situation day in day out you do not. Dont be afraid to ask questions.

I wont pretend this is not a serious illness nor will I promise things will get better. What I will say is get to know the illness. Get to know the medical team supporting your husband. Dont be shy in asking questions you have to take ever day as it comes.

I am here to support you if you need me.

Be strong and best of luck. Xxx

[carer2709 in reply to berties]

Dear Megan my heart really goes out to you because my husband was diagnosed with cirrhosis in October 2012 and after many brave episodes in hospital he died in June this year. He was a drinker - a social alcoholic but not what most people think a real alcoholic is - i.e. wake up & need a drink.

He did stop drinking but he was one of the unlucky ones, your husband mustn't give up because many people do recover. You will have to be very strong and you will need the help of all your friends and family to take some of the weight off you as primary carer. I completely agree with Jojo - I wonder if smokers with cancer are treated with the same attitude as a drinker with liver problems. One particular aspect of liver disease that we weren't warned about was the way it makes the sufferer depressed & lethargic - not just because they have a really serious physical condition but also because depression and lethargy are a symptom of liver disease. You really have to find an amount of patience you don't think you have to try to encourage your husband to eat little and often, and exercise very gently and don't just sit around because poor circulation is also a problem. I strongly advise getting a second opinion, seeing a nutritionist, getting as many of your husbands friends to help as possible - to persuade him to eat - be very careful he is not at risk of any minor infections and above all cuddle and massage him as much as possible. With very best wishes Mary

[megan1]

I would like to thank everyone on this site yhat have sent me support over the last few days. My husband passed away on New Years day after a long night of suffering. I am going to miss him so much as he was also my best friend. All your support was appreciated.

I would like to ask all those that have been diagnosed with this terrible disease to to stop alcohol completely before it is too late.

[AyrshireK in reply to megan1]

Megan, so sorry to hear the news that your husband sadly lost his fight with this terrible illness. It fills me with dread every time I hear of another loved one passing especially when I am supporting my hubby through this condition, especially feel powerless when there is nothing we can cut out or really do that will help his liver as his was auto-immune caused.

Anyway, my thoughts are with you at this sad time and I hope you manage to rebuild your life beyond this.

Hugs from Katie x

[megan1 in reply to AyrshireK]

Thank you for your support

[angse in reply to megan1]

Dear Megan I am so sorry to hear about your husband and what you are now going through, god bless you and your family. Angse

[Toomedic]

Go check out craigcameron.com. Another liver board.

[Welshcake22]

My partner was always a functioning alcholic, but in December 2012 he was admitted and diagnosed with cirrosis and has been abstinent since then. He needs a liver transplant and has been in and out of hospital with hepatic encephalopathy 3 times this year after falls etc. As his partner it is hard to go through, get as much support from outside agencies as you can, Carer's Groups etc. They will help you. I got a lot of help from them. Now he is on a much better keel. He lost his appetite and was wasting away and this was making him fall over as he had no co-ordination or strength. He was misdiagnosed codeine from the last fall he had, and this made him worse, and he ended up in hospital again with confusion after falling. He is now eating much better and is much stronger.

He is unable to work and getting any benefits is hard as I work full time and PIP Is taking forever to come through. Fingers crossed things will improve, it is very difficult for both parties, the ex drinker and the people around them. We had a much better Christmas this year, he is doing well, mobilising a lot , though he has been basically housebound for 6 months. The gastro and the hepatic consultants were all pleased with his progress in Dec 2013 but it has been a long journey and not over yet.

All the best for you and your partner.