Me and my partner have together for a year now. Started as friends, knew from the word go,he had cirrhosis. But it didn't change anything, still wanted to form a relationship with him. He had a call from a liver nurse today. She was very blunt and matter of fact. She triggered him again. She talked about a transplant at some stage. My partner said that was something he needed to consider. Her exact words were, you'll be in that much pain. You'll be begging for a transplant. She discussed other things aswell. I thought this was quite harsh, as it is a frightening thought. He is so distraught tonight, confused about our future. There seems to be nothing, I can say or do to help him today. Has anyone else, started a relationship with someone, knowing they have a serious illness?
Claire x
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lifebegins53
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I met my now hubby in December 2009 (during a battle reenactment of all things) and he came to visit me in Scotland in January 2010 - at the end of his short stay we decided he would sell up his home in England and move in with me around March 2010. At that time he was poorly but his symptoms were never properly investigated by his GP who put them down to stress as he was caring for his Dad who was failing badly with dementia at the time. Looking back all symptoms were liver related but since hubby is life long t-total we never even considered he might have something wrong with his liver.
We got engaged in May 2010.
In April 2012 and almost completely out of the blue he started with symptoms of decompensated cirrhosis and ended up in High Dependency Unit an awful green/yellow colour and having suffered a massive and almost life threatening bleed.
At that time we investigated how we could marry (even considering a hospital marriage) but thankfully he got out of hospital and we went full swing into planning our wedding. Owing to his continuing ill health we made it a small affair in a local village church with a buffet and little garden party back at home - all just with family and a few close friends and it was perfect.
To this date we have never been able to consumate our marriage due to the hormonal issues that cirrhosis brings, we don't even share a bedroom because of his sleep disturbance and both of us needing what sleep we can get. We still have the closest bond, lots of hugs, hand holding and cuddles and we are a great team. I tend to deal with all the medical stuff whilst he concentrates on living his best life.
We've been through transplant assessment together and he was on the list for 10 months which restricted both our lives - I had to pause my volunteer work and self-employment because had the call come I needed to be at home for him. It was good practise for shielding during lock down if nothing else.
Hubby is now 62 - i'm 49 and I am so glad he is in my life and I am there for him when times are tough and to help him with every day living tasks - he gets Personal Independence Payment and I am able to claim Carers Allowance since he needs a fair bit of support - mental and physical especially with regards to him having minor HE and some cognitive issues caused by his condition.
Your relationship may change when you are supporting someone with a long term illness but there is no reason you can't be a great team - avoid becoming purely his carer, you are in it together. Life with cirrhosis is a roller coaster and there will be good days and bad days, ups and downs, inability to plan from one day to the next BUT you just have to ride the roller coaster and make the most of better days.
Thanks as always Katie....I fear I may of lost him. We live apart, he's down south and I'm in the Midlands. He comes up every couple of weeks. We originally met when we were 15. But got in contact again at 53. We make each other so happy when we are together. But he has hit rock bottom and is very confused about life. And how he can't put his condition on me. How I need to move on as he said he has no future. But I do....I am feeling so sad at the moment, but its his decision
Hello love. It sounds as though your partner is lucky to have you by his side, through what is an awful lot to take in for both of you. Unfortunately I've been single throughout my liver cirrhosis diagnosis and up to present. Its alot to deal with mentally, I can completely empathise with him. But fortunately I've a good gp and liver nurse....with whom I can really open up to and I've had some very helpful counselling. Would your other half think or even consider counselling?. We are each different, some can take more knocks than others....and its Not a failing at all to want a helping hand at times.....and a listening ear. I've found my consultants to be very matter of fact,but they know their job well and I trust them ...so I'm more than grateful for that.
It takes time for things to sink in,and he needs to give it time, yes tonight will probably be quite difficult im sure.....but time is whats needed maybe,for things to sink in.....
That seems like a very difficult situation you both are in. I have been married and am now on my own and honestly the thoughts of a relationship completely went out the window. Now at 44 I thought I had some hopes for a possible future with the right person but honestly I don’t know how a partner would cope with this disease. Personally I couldn’t put someone through it but that is just me. It can work for some people I guess but it certainly wouldn’t be easy.
I’m sure your partner doesn’t want that for you but that’s a really personal and individual thing.
Is it his decision though? If he decides he doesn’t want to be with you THAT’s his decision. Deciding for you that you shouldn’t be with him because of his illness isn’t his decision to make. Does that mean all ill people should be on their own? I have autoimmune liver disease, my 2 kids have type 1 diabetes. We all have wonderful partners and I’d like to hope that we give as much as we receive. Push back - it sounds like he’s not thinking straight because of the conversation the nurse has had with him. It’s knocked him for six and made him feel worthless. Show him he’s not.
Hi thankyou for replying, yes it triggers him everytime ge has an appointment. He is very independent and so used to fixing other people's problems,this is his but he can't fix it. He is such a lovely person it's heartbreaking to see him like this. Hopefully he will learn to deal with it better.
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