I only joined this site about a month ago. My husband was gradually becoming unwell over a period of months last year. Trying to seek help from GP was very frustrating and also not being seen physically due to restrictions, anyway this resulted in him being admitted to hospital in late November as bloods were eventually done that should his liver and kidneys were struggling. His abdomen and ankles at this point were swelling up too. After a barrage of tests he was advised that he had cirrhosis of his liver, asked re his lifestyle and through a combination over the years of several treatments for psoriasis, being overweight and drinking more than recommended amounts of alcohol this has all been a factor.
He has since then had been admitted for a very severe nosebleed which eventually was controlled in Jan and then again just a week ago as he was struggling with ascites but beds were hard to come by and checked there was no infection discharged again. We were becoming increasingly frustrated at lack of communication wanted to know exactly what this meant for him going forward. Seen by liver nurse fortnightly but when he was trying to get through as advised if any problems to contact them it was very difficult. We had our hopes pinned on an appointment with consultant on 09/03 where we would then be given information of where my husband was at and plan going forward.
Our life has just been turned upside down he started having small nosebleeds again liver nurse told him to contact Gp to be referred to ENT on Fri, told no Gp available but call back on Monday. On Sunday night he had a severe nosebleed again but started being sick I called an ambulance and was admitted. I asked what impact this was having on his ongoing liver issues in a call with a doctor to be asked what did I mean!! He was admitted to HDU as lost a lot of blood and on being taken down for an endoscope this was when our hell started.
Had varices in his gullet that were bleeding tried to tie them off, but he then started bleeding again were unsuccessful in stopping this. I was then told he was a very ill man and to prepare for the worst. He was transferred through with intensive care team to a city hospital as there was nothing more they could do. He had then also started bleeding in his stomach. Put a ballon in to stop this but planned to do TIPS in the morning but had to call in team during the night as I was told to basically save his life.
This has been successful but been told the next few days will be crucial and that he is stable but still critical. He is 51 and up to last year apart from psoriasis over the years was otherwise healthy, we had got a dog and were enjoying getting out walking with her, our son was 19 and becoming independent that the plans we had for time away. I just can’t comprehend where we are at and struggling to take it all in. Family are rallying round but it’s up to me to be the one who absorbs all the info and pass it on. Any advice on how to get through the next few days even would be much appreciated and any tips for his time in ICU from anyone else who has experienced this. Sorry for the long post but good to vent somewhere else
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Leia01
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I’m really sorry to read your post it sounds incredibly stressful. It’s really important that you look after yourself too in this, so try to take a bit of time out and try to eat and sleep as well as you can. I’m sure that is easier said than done but it is important. I have cirrhosis which was diagnosed March 2021 when I was admitted as an emergency with a deep rooted infection. I had very bad nosebleeds too. Not as bad as your husbands but I lost a lot of blood. It’s incredibly frightening to have them but even more scary for those watching them. Particularly if they are hard to stop. Your husband doesn’t sound in a good place I’m afraid. Profuse bleeding and ICU admission are a bad combination so I think I’d be gathering as much information from the clinical teams as possible. If they’ve managed to stabilise him then that’s good and being in such a high intensity care setting means he will be getting the best possible care, they will do everything they can for him. It’s good you have family around you. Try to get an appointment to see the consultant in charge of your husbands care and take one of them with you. Gather the facts and ask the consultant to explain the possible outcomes. I’ve not been as sick as your husband but I gave my family a real scare when I was admitted last year, it was touch and go for me for a few days. I did manage to pull through and am well now so don’t give up hope. The fact he’s stabilised gives you some indication that he’s fighting. I had no idea what was going on but my family tell me that they had several family conferences and two very helpful meetings with the consultant. Once they had the facts they felt more in control and better able to deal with the situation. I actually think it was harder for them at that point than me. So as I say look after yourself. Keep us posted.
Thank you very much for your reply and taking the time to read my post. I got in to see him yesterday and they were starting to take him of the ventilator, by last night he was able to talk to me on the phone although he was still quite groggy and confused I was really surprised to actually have this happen. I am actually just of the phone and he is sitting up in a chair reading a newspaper, I am actually in shock in a good way that he is now talking on the phone. Awaiting on surgeon coming round to see if they can start him on food . To go from that to this already when I was told he would be out of it for a few days it’s a relief. I know this is just the start of things but at least as you suggested can now ask for what’s exactly happened and the plan going forward. I have downloaded the suggested questions to ask your consultant from this website and at least have a base where to start. Going to see him this afternoon again but at least not having that lead weight feeling in your stomach like yesterday.
Glad to hear things have stabilized. Have they talked about a transplant? Please keep us updated, we are here for you! The fact that he was sitting up and reading a newspaper is very good news.
I was in yesterday and all support has been removed from him. He is managing on his own & actually managed to eat something! I was told on Tuesday night it might lead to transplant but when I received a call from the city hospital they said no not necessarily that if they got this under control. I was told that he lost so much blood that they had practically replaced all his blood volume. I can’t believe I was actually sitting yesterday talking to him, and my son got to speak to his dad on the phone.
Well that is excellent news. If it does become necessary please consider a living donor transplant, if not in the UK than abroad because that means it happens sooner and the chances for survival are greater. India and Turkey should be considered (google that and see options).
On the other hand ANY kind of transplant is always the LAST resort - keeping your own liver is always the best way to go if that is possible. This sounds like it could be the case for you which is good to hear about.
Keep things going in the right direction with alcohol abstinence and a healthy diet and please stay on the board! This board has been a tremendous help for so many!
Hi,
We are sorry to read what a stressful time you are going through.
If you are UK based, you are very welcome to call our nurse led helpline on 0800 652 7330 10am to 3pm Mon to Fri for a supportive chat.
Hi Leia. So sorry to read that you are going through a very hard time. My husband was also having a severe nosebleed when l called an ambulance for him. He too was admitted to HDU then ICU. However your hubby does seem to be doing far better than mine did so hold on to that hope.
As well as liver failure he also had kidney failure then bronco pneumonia and died 10 days later.
My hope for you is that your hubby is coming through it just be prepared for some pretty tough times as far as looking after him goes. He will need a specific diet and lay off the alcohol completely.
Look after yourself too. But all the very best for a good outcome.
So sorry to hear you're going through this. We nearly lost my husband to a massive bleed too. Its very comforting when you come on here and realise how many are still here to tell the tale. I hope yours is a success story too. Take care of yourself and don't underestimate the impact the traumatic last few days will have on you both. I don't think you ever truly forget that moment you thought you might have lost your loved one.My husband found getting an online physiotherapist helped him get back on his feet and regain strength when he got home, but don't worry about this kind of thing yet. Just try to focus on one day at a time.
I'm so sorry to hear this Leia. My thoughts are with your family and husband. The nose bleeds are certainly scary, even the small ones that I get quite often. It's so upsetting to hear how Covid and restrictions have not only affected those in the liver community but also those with cancer. I had to skip labs the year before I was diagnosed because of it. The same thing happened for a few years here in the states but now everything is wide open which also isn't good. Try to remain as positive as you can because us men need that. In many cases if we see our wife scared we tend to get more scared ourselves. But certainly take care of yourself!
Sorry to hear what a stressful time you’ve been through. Bleeds can be terrifying. I know when my Mum had one it was a real rollercoaster. Once she was out of the woods I just couldn’t stop crying - I think it was the relief, all that emotion I’d been holding in just had to come out. Make sure you talk about what you’ve been through. Use your support networks and theTrusts Helpline. Best wishes
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