What questions should I ask?

My husband is 64 and an alcoholic who was diagnosed last year with cirrhosis. We have been living apart for over a year now but I still do what I can to support him. My husband now lives in Scotland whilst I am in London. During the 12 months we have been apart he has been in and out of hospital several times, I have not been able to talk to anyone about what is going on as the medical professionals just wouldn't give me any details when I called. I understand why so this is not the issue. Anyway to cut to the chase, my husband stopped drinking heavily last October. I am not convinced he has been completely alcohol free since then but it is a significant improvement. He has signed the papers so I can be his power of attorney and he has arranged for me to speak to his doctor. So my question to this very supportive community is what questions should I ask? My husband is on the following medication - omeprazole, rifaximin, spironolactone, senna, thiamine, furosemide. He also drinks the ensure supplements. I guess I want/need to know how serious things are. My husband just says 'if I stay off drink, take my meds and eat well I've got a fighting chance' I know everyone's case is different but I need to make sure I am asking the right questions so grateful for any guidance anyone can give me. Thank you in advance.

9 Replies

oldestnewest
  • By the sounds of the medication he is on he suffers with H.E hepatic encephalopathy which is the rifaxamin and he also on water tablets which means he suffering with ascites. his liver is working but struggling, you need to find out if they are lining him up for an assessment for transplant because if they are the only way they will do is if he has been off alcohol for at least 6 months and they will test him to check. The only way he has a chance is getting on transplant list.

  • Thank you for taking the time to reply. The doctor had talked to my husband about a transplant but I'm not sure if he is being considered at the moment. I'm going to talk to the doctor soon so that I have a better understanding of what is to come. I also want to ask about taking paracetamols as my husband still pops these like they are going out of fashion. I've asked him if he has been given any advice on safe quantities but he just says that he doesn't remember. Likewise with limiting his fluids and salt intake. Trying to support him from a distance makes everything harder too. Thanks for the feedback, hopefully things will be clearer once I've spoken to the doctor.

  • No problem at all and he should be limiting his paracetamol intake. And I was on no salt at all especially with ascites. I hope you get some answers once you talk to the consultants x

  • Which hospital is your husband under? If transplant is to be considered he needs to be referred to the Royal Infirmary of Edinburgh which is the main liver centre in Scotland and only transplant unit. As Jo-Jo has pointed out he will need to have proven abstinence from alcohol and only then would he be assessed for transplant. Assessment involves seeing if someone (a) requires a transplant and (b) are they fit enough to actually undergo the surgery and the recovery. It must be really hard to support your husband from so far away, it is hard enough to support a partner when you are with them 24/7 and physically attend every appointment with them. I know that my hubby takes in very little of the 'med-speak' at appointments and we go over everything for many days after each consultation.

    You need to know how bad things are, what actual symptoms is he showing ? and what stage do medics feel he's at? Is there a chance of any recovery? is he likely to be a potential candidate for transplant ? and is he being referred to Edinburgh? Do medics feel he is still drinking ? - this would be a contraindication to transplant and he wouldn't be considered for one. Is your husband alone in Scotland as this would also impact on the likeliehood of transplant as it is considered hugely important that they have a support network .......... transplant isn't something you can go through alone.

    The Scottish Liver Transplant Unit have an excellent website which you can browse through with patients and carers guides, medical protocols etc. It's at:- nhslothian.scot.nhs.uk/Serv...

    You've obviously got lots of things you need to clear up with doctors. It's a tough ask from so far away and I wish you all the best of luck.

    Katie x

  • I didn't think this forum iwas a place to make judgemental comments. It's early days for my husband and he has a long way to go in order to prove that he has stopped drinking. There probably are more worthy causes but I wasn't asking if he should get a transplant I was asking for guidance on what questions I should ask his doctor about his condition,

  • Croc786, whilst you are correct in saying this gentleman won't get a transplant if he is still drinking your statement about not deserving a transplant is very sweeping and judgemental for this forum.

    We have many members who are here for support with their drinking and to ask for advice about drink and the liver. This lady is asking for advice on how best to support her husband. We have many members who have changed their lives around sufficiently to get a life saving transplant & are now living much more positive lives as a result.

    One does not have to be a screaming, roll about in the gutter alcoholic to sustain serious liver damage from alcohol - even some folks with only moderate / social alcohol use can get liver disease. The question of deserving a liver transplant doesn't come into it.

    For my part I am supporting a husband with cirrhosis who is life long t-total, he has spent time on the liver transplant list but is currently stable enough not to be needing one.

    Katie

  • Thank you Katie, as this was my first post to the forum I was shocked to get Croc786's comments. However I won't let it put me off as I have been following numerous threads and everyone is so supportive and understanding. I will give Croc786 the benefit of the doubt this time.

  • Dear JakeG.

    One always gets the odd "troll" on any internet forum deserving of sensible discussion and input, but I also think you are correct to give Croc the benefit of the doubt.

    As for Katie, I find her comments to be both informative and supportive to people with many many questions with regard to liver health. A remarkable lady in my opinion.

    I hope you will find some answers, guidance and advice as to the questions you have on here, but please do seek advice from health professionals where you are able to (but I am sure you know that - it's frustrating that you live so far apart from your [estranged?] husband)

    I wish you well. I can tell this is troubling you a great deal and my thoughts are with you. I hope you find some solace in this forum.

    Paul :)

  • Thank you Paul. Yes my husband and I split up in January 2016 because of his drinking but we have remained close and although I live so far away from him I am in daily contact and I am also in touch with the people in his support network - social worker, addiction counsellor and the house manager where he is living. I'm learning a the time about liver disease and feel like I am in a position now to talk to my husband's doctor. I agree about the forum - everyone had been very positive.

You may also like...