Hope you've had a good Xmas x
I feel like I am in limbo. I'm still under the liver team and last time I saw the consultant he said that I may not have to have a transplant.
I'm confused last year I was told that without a transplant I wouldn't be here this Xmas but I am. At the same time I told about 5 years.
It's the uncertainty that gets through when you feel low. I also wonder if I will spend the rest of my days exhausted. 🤔
Right.....end of moan, Happy New year in advance xxxx🎊🌟🎉💕🥸🥇⭐🤩
Hi Charlie.
Uncertainty is always something that plays on our minds the most. I don't like not knowing. But if your consultant said you might not need a transplant, I'm assuming that means you have been doing very well and your liver is stable or even improved. Did he not say why you might not need it?
Dave
My hubby was delisted from the transplant list in 2015 having been on it for 10 months. At the time we thought that the light at the end of the tunnel had been snuffed out but we gradually came to the realisation that not everyone does get the 'Happy Ever After' post- transplant & there is no guarantee that t/p would get rid of the exhaustion (as doctors explained to us). Surgeons pointed out that some of the meds can cause people to feel quite poorly going forward too. (What highlighted this to us was that at the time hubby was delisted we had a young lady on the forum who had battled hard to get t/p and sadly didn't live beyond a few weeks after lots of complications - the surgeon during t/p assessment also pointed out that around 5% don't actually make it off the table (they have to point this out!).
In hubbies case were told it wasn't a case of if he'll need transplant in future but when, however, we decided we were going to make the best of every good day. Mum and Dad helped us buy a new touring caravan so we could go off and have adventures and make memories and yes hubby suffers sleep disruption, cognitive issues and exhaustion but some days he can push through that and indeed he does.
He set himself small targets for walking whether that be a mile saunter round our village every day or gradually longer and longer. During lockdown he was out round local lanes and eventually managed a 16 mile walk between two local monuments which was a MASSIVE achievement - we also started getting out in the Galloway Hills doing some pretty serious hill climbs. Hubby is a chap who used to take part in long distance challenge walks (100 milers in under 48 hours, the Fellsman Hike 60+ miles 11,000 feet of climbing in under 30 hours etc). Being diagnosed completely out of the blue totally wrecked his world but he hasn't laid down to it.
In September he and I took up cycling and he absolutely loves it and now goes out every second day if not more (sadly i've torn the cartilage in my knee so am stuck indoors waiting for surgery) - he's just got togged up in his mountain bike gear now and has a 17-20 mile route in mind for today. He's knackered before he starts, pushes himself to get out, fuels properly and comes home tired but absolutely buzzing.
It has done wonders for his mental health, he has drive and is so postive. He doesn't dwell at all on his liver illness, ok it's there in the background all the time but he lives life to the max.
He gets more tired if he sits in the house bored and has liver twinges if anxious but getting out even for a short while enlivens him and his liver seems to be behaving itself.
We are now 6 years on from delisting, no further symptoms, maintaining good weight and living life. No one is guaranteed a tomorrow so make the most of your todays even though you might feel like cr*p push yourself and you'll find you actually really feel a lot better.
I hope you find hubbies story inspirational because I certainly do, he ain't going to like down to this thing. He's 60 now and makes the most of every good day - yes he still has cr*p ones occasionally but he used to need daily bed rest and I can't remember the last time he had to crawl back to bed during the day for a few hours.
Take care of yourself, stave off the need for t/p as long as possible.
All the best,
Kate
This is so comforting to hear Katie I too was told last year I was end stage 4 Liver disease and not for a transplant as I have other comorbities, it absolutely gutted myself and my family but I'm trying so hard to regain my strength and stamina and have taken to doing a little fairy garden for my beautiful Granddaughter, I cook so much I could feed an army anything to distract from when you read the lifespan scales, I hope you had a good Christmas and wishing you and your husband a very happy New Year, you always give us such positive hope, Thank you XXX🧚🧚♀️🧚🧚♀️
Big hugs I know exactly how you feel, I am on a mission to live some kind of quality of life in the New Year , my diagnosis was the same, I have other comorbities so not a candidate for a Liver transplant, ignore the life span scales, I going on a mission in the New Year to improve my muscle wastage and regain my strength to improve my mobility, I distract myself with cooking just about everything and creating a fairy garden for my beautiful Granddaughter, Sending big hugs to you, hope you have had a nice Christmas and a very Happy🧚🧚♀️🧚 New Year to you, xxx
Yeah you are right, it feels like I'm sitting in a lay-by waiting to to carry on living. I'm due to be reviewed by Birmingham again at some point but in the meantime stuff it, let's enjoy life xxxx Happy New year 🎉 😊
Exactly it's time to sprinkle some fairy dust and start living again, love and strength to you XXX🧚🧚♀️🧚
All ready for new year 🥸👍🤣🌟🎉 Love and happiness to you all xxx Michelle 💜🙏🫂🐈⬛🌟
Absolutely fabulous, Happy New Year to you 🧚♀️🧚🧚♀️xxx
Happy New year. Love Michelle
First off happy new year to you. I have also found the uncertainty a terrible drain. Being told different things by different doctors leaves you in limbo. I just want to know where i stand. I have had a tips procedure and been told i have end stage liver disease. I've also been told that I'm not viable for a transplant. But no one can tell me what to expect. Being constantly tired and yet unable sleep is a real pain as well, I can sympathize with you. I hope you're able to stay strong and keep pushing for the treatment you need.
Thanks for that, I Really want to get back into work, we'll see. Happy New year to you xxxx Michelle
Happy New year 🎉 xx Let hope it's going to be a good one xx Big hugs xx
🩰🇬🇧🐕🐾🌼🌺🌻🏵️🌷🌸🍀😻
12 months what can you say?
What to do next?
Bad news????
As cites,what will happen next.
