Phone consultation with consultant

[lifebegins53]

My partner has just had an appointment with his consultant. He has cirrhosis, everything is going OK, he had a bout of ascites in October. That was controlled with medication, which he is now on permanently. He is diabetic but is now tablet controlled due to a massive loss of weight. He is keeping fit and as eats as healthy as possible. Dosent drink at all now....

I feel so upset though as she said, generally speaking 12 years is the most He can expect to live.

We have known each other a year and plan to live together. I've kept an open mind about it, but today I feel deflated and sad that I could lose him sooner. 😔 why is life so unfair 😔😪

[AyrshireK]

No doctor can put a figure on life expectancy with cirrhosis, my hubbies consultant has frequently told us he has patients on his books who have had a cirrhosis diagnosis for 20+ years and are neither at death's door nor needing transplant.

If your partner remains abstinent and remains stable there is no reason he can't live a long life even with cirrhosis AND in the event of any deterioration potentially be considered for transplant.

My hubby (then fiance) almost died from a massive variceal bleed and was subsequently found to have decompensated cirrhosis back in April 2012 - we married in August that year. He went on the transplant list in 2014 for 10 months but subsequently improved so significantly he no longer met the criteria for transplant (i.e. too well). Now all these years on he is still stable and doing ok in the grand scheme of things - ok not 100% well by any means but not needing transplant and just being regularly monitored.

You could get hit by a bus tomorrow, you just have to live your best life every day, life with cirrhosis is a bit of a roller coaster, ups and downs, good days and bad. You just have to live your best life for however long that is but as I said if your partner remains abstinent, re-stabilizes and stays well there is no telling how long he can live.

My hubby took up cycling during lock down on a manual bike and then we invested in e-mountain bikes and last year we covered over 1000 on the e-mtb's and hubby did 600+ on his manual bike too. Life with cirrhosis isn't all doom and gloom and don't let it get you down in that way.

Katie

[Sophia1968 in reply to AyrshireK]

hi Katie, please don’t think I am being rude jumping in on your post as you were not actually talking to me…. But can I just say , reading your post made me feel really emotional, I think this is the best reply anyone could read, you give such positive vibes and hope, along with proof (we all crave proof) the story about your husband fills me with awe, not just for how well he is doing but for the way you both live your lives, I truly believe positive vibes always help any illness and sadly negative vibes have the opposite effect, I really need to have your attitude, I have many issues and sadly I always let them get in the way of enjoying life, reading your post put things into such perspective and it really must feel people with hope, I know it has really helped me, thank you and hope you didn’t mind me saying so xx

[AyrshireK in reply to Sophia1968]

Hi Sophia, sometimes it's too easy to let ill health dictate but life is for living - hubbies motto has always been you only get one kick at the ball and so you must grab every opportunity. We never anticipated when we met in 2010 that two years later he'd be given such a serious diagnosis or that we wouldn't live the life we planned BUT we do make the most of life, we bought a newer touring caravan when he was taken off the transplant list and we make the most of it - some days we know he won't be up for much but on good days we absolutely make the most of them ............ yesterday we went for a near 5 mile walk in our local country park enjoying a picnic on the beach and wandering through the snowdrop filled woods. With us both having had covid a fortnight ago (hubby requiring the anti-virals) it was an absolute tonic and helped us get some fresh air in our lungs. Time outdoors is a massive healer.

Some folks let the figures and scores and blood results rule their lives - we've never been told any and hubby never ventures online or looks up anything about his liver. He leaves the management of his condition up to me and we just get on.

Positive mental attitude and living life to the max are key, we never know when hubby is likely to deteriorate - in 2015 we were told it's a case of when he'll need a transplant rather than if but here we are in 2023 and he's ticking along not too badly and long may it last.

Katie

[Sophia1968 in reply to AyrshireK]

absolutely long may it last, as for not looking at numbers I think that is sensible, we are all different and numbers are different for different people, not everyone feels the same at certain levels, before I came down with all my conditions I used to be one of those people who took no notice of temperature or doctors saying something is wrong, my attitude was if I feel ok that’s good enough for me, I need to get this attitude back, I’m glad you and your husband had a lovely walk and picnic, but sorry to hear that you both had Covid, enjoy more days going forward you really are inspirational both of you, x

[DD75 in reply to AyrshireK]

Hi Katie,

Inspirational always.

My hubby and I got married after he came out of Critical Care last year (March) he'd had a bleed (varices erupted) it was touch and go for days

He has (child c)cirrhosis and has had TIPPS procedure.

Recently hes been housebound downstairs due to broken knee and wrist and he can't move or very little and ive got to be honest its been hardest time since Critical care he had a virus 3 weeks ago he put on antibiotics gave him paracetamol then told cant give him paracetamol 🤷‍♀️ he went slightlyyellow🤦‍♀️ doctor thinks pregablin for pain side effects are causing days where he cant stop his hands shaking and is in a world of his own (weve established its the pregablin as hes not moving around so must build up, when he doesn't take it for 14 hours or so hes ok no shaking etc. ) Honestly it's heartbreaking he's been a soldier all his life until 2 years ago to see him like this tears me apart.

Added to this he now has a cyst on his pancreas which they said was benign and we have an MRI today for pancreas but! With all this going on his recent blood tests were ok and strangely his blood sugars have been fantastic for last 2 weeks first time since diagnosed as a diabetic 🤷‍♀️.

I just read your story and pray things get better soon, your story gives me hope 🙏 thank you Katie

[lifebegins53 in reply to Sophia1968]

I couldn't agree more with what you have said. Such an inspiration to us all x

[lifebegins53 in reply to AyrshireK]

Thankyou Katie.....I know we have spoken a few times. I have tried to be positive, but today is a downer for both of us. But reading again your positive words gives me encouragement and hope. This group is amazing how much people support each other. I thankyou from the bottom of my heart for your reply.

Claire xxx

[oap74]

this group is amazing ! Your comment is so true I find it so informative it’s a breath of fresh air to read about others experiences like yourself, age has a big influence on how you deal with it something I feel the professionals appear to ignore in my opinion. All the best and keep reading.

[EmmaThom in reply to oap74]

Completely agree - this chat site has been an absolute life line. Its really useful to hear about other's experiences, and has taught me to IGNORE DR GOOGLE! I practically gave myself a heart attack when I researched my condition, I have learnt to live in the moment and put my trust in the medical experts xx

[Readlots]

Hi, my Mum was told that she had 2 years when she was first diagnosed with Primary Biliary Cirrhosis back when no treatment was available. She lived another 20 years until she was 75, 5 years longer than my Dad who didn’t have any underlying health condition. She ate healthily and walked every day. Hopefully you and your partner will have a long and happy life together too.

[lifebegins53 in reply to Readlots]

Thankyou that gives me hope xx