I posted a while ago about going for 2 days tests for a TP suitability. I wanted to say a big thank you to everyone who responded. There are too many to reply to individually so please accept my heartfelt thanks.
During the tests re. decompensated liver and HCC, they found a clot in my liver and also diagnosed me diabetic. Kept in hospital for 6 days as sugar levels wouldn't come down from over 30 for some time. Lots of insulin.
More tests including heart stress test which looks OK I'm told. Haven't officially been told I have passed and the waiting is difficult.
Quality of life is so limited as I'm sure many of you experience. I do try and stay positive but have bad days. Especially no sleep, itchy, wondering feet etc. and dozing in daytime and forgetfulness. something I try to avoid if possible!
Since July I've quit drinking,smoking, eating red meat, processed foods no added salt, fruit drinks (very sugary), fizzy drinks to name a few.
I've had to stop work and rent a small place and am trying to get PIP as I dont qualify for UC. I live alone.
Recently I want to rebel. Have a burger chips with salt, deserts and a gallon of hot Jamaica ginger ale !
Trying to exercise and stay positive.. it may sound nuts but scared sometimes to look forward to things in case it all goes terribly wrong.
Has anyone been where I am ? I have friends who's friendship I managed not to fuck up too much through alcoholism but sometimes hearing/talking about the mental health side of liver disease with someone who has been there is very powerful.
I hope the above makes sense 🙏
Gus
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Gus63
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Well done on attending the tests 👍 They do sometimes appear to leave more questions than answers, but just having been called shows they believe there may be a positive outcome for a TP for you.
It is a series of baby steps in a physical sense crossing each milestone - at least they can lay out a path/plan for you after all the tests. Sometimes the outcome is a TP, but only if the benefits outweigh the negatives in your own particular case.
Mentally it is harder sometimes. Good days come with focus, good news, personal optimism and small victories and perceived progress.
Bad days can be harder – feelings of being out of control, boring repetitive routine, lack of progress/information, physical setbacks and endless waiting.
Trying to not get in a rut over eating/exercise/meds/stats/worry has been in my case key. Also thinking the top of the mountain is just within reach and it will all be done can be hard, as a new mountain is always after the last one. Turning this thought into a positive rather than a never ending trudging negative avoids disappointment and gives small manageable success mile stones. There isn’t a single golden ticket moment where everything is suddenly ok, it is more a collection of momentS all hanging together.
As I advanced through the program I got more and great support from the hospital liver team. They held my hand and were always available. Engage them in a positive way, they really are there to help you.
Try to shake up your routine, whether that is eating, exercising, going out. Boredom allowed my mind to settle/worry on negative things. I joined most of the clinical trials I was offered. They began just to shake up my week, but I have made some good friends and knowledgeable friends from attending the clinics as well as feeling good giving something back to the liver community. The trials team really helped me after the TP – way above and beyond their job. An unlooked for familiar face is a god send at key moments, especially when in the machinery of hospital life. Joining the zoom meetings on this forum has really helped, as your post says, nothing can beat talking to people that have been there and come out the other side. We all have a different story to tell but a common thread that runs throughout.
Apologies to splurge back at you, but me and my new liver can be very emotional😂😂
Good luck and you need anything (apart from the physical liver 😱) then always happy to talk.
Thank you so much for your reply. Not a 'splurge' at all. It was really helpful especially thinking that the top of the mountain is the last !! I did see things in black and white wanting definative answers an results and sometimes that's not possible. I had no idea how complicated liver disease can be. Before I got ill I thought it would just repair itself or I'll get a new one! I think that maybe a belief shared by many 'Joe public'. How wrong I was.. . Well not wrong bus seriously ill informed.
My team are great. I try to engage with them whenever I can and I feel I have the right people around me for which I feel so lucky.
I will take your advice on boredom.. it is very easy to slip into it.
It's early days for me certainly compared to some posts i have read.
Oh love, life is hard enough. Have a burger if you want one!!! Then get back on the food wagon 😁Great you've taken such positive steps already, particularly cutting out booze. It's always good to not just focus on the physical but also the mental. Try some meditation, relaxation techniques and I say this to everyone so I apologise if I'm boring but exercise is absolutely key!! It might not seem feasible depending on how you feel physically, it took me a year to realise it's what I needed and now I'm in the best shape I've ever been despite being on the tp list. I've been told because I am doing so well the chances of a tp are low so it's a very strange catch 22 - but my gosh I probably wouldn't be here if I hadn't got my arse in gear!!
I wish you all the best and trust me when I say give it time, you WILL feel better xx
HiMany thanks for your support. I think you're right about exercise but find motivation difficult. It was heartening to read your words. I will try meditation again. It's on my list. If I didn't have HCC and blood clots in the liver then my Doc said I would be borderline TP but liver too fucked up to operate and only solution would be a TP which I'm sure now isn't a magic bullet but seems only option if I'm lucky to get one.
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