Worried I’m feeling too good, 1 year in 3 months since hospital month visit for decomposed stage 4 cirrhosis, has took me this long to get back to normal, now compensated no symptoms anymore, apart from struggling to put weight back on but generally I feel ok apart from the mental aspect that’s my main issue but getting there too.
Awaiting a new meld score my last was 12 I’m pretty sure it will be better this time, but my bloods are abnormal and have been for a long time but slowly improving.
I’m worried now that this is my peak and I will deteriorate it’s enevetable, and time span of life is decreasing, will I slowly deteriorate to the point in say 2 years I will need a transplant, I also awaiting the test to see if my portal hypertension has improved.
Basically do you go downhill to the point of transplant, I’m 38 and would say quite fit atm... stage 4 cirrhosis 5 years? Then transplant another 5???? I want to know now so I can kind of make plans, I can take the truth from my consultant but obviously he won’t say anything apart from you are improving and I’m getting an appointment at the freeman transplant hospital, hopefully face to face to see where I’m really at??
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Jimmywaz
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Hey Jimmy,Firstly I want to commend you on getting through the painful process and have, by the sound of it come a long way.
It takes a huge strength of character to get where you are. I am guessing , enjoy your deserved time of feeling better.
I too suffer mentally which is challenging itself without my Decomposed liver. It has been nine since going into hospital for the first time with this. I look at your story as positive and I wish you all the best.
Thanks mark, I’m sure you will get to compensated and I’m interested in your progress, so keep in touch on here, sounds like we are at the same sort of stage.This time last week I was in tears, just found out so called on and off girlfriend was with someone else, took a while to come to terms with as I can’t offer anything long term and not working so thought I had no future and can’t expect her to settle for someone with my problems and was the reason we spilt.
Just kind of coming to terms with this, this is it now, pottering rnd in garden, out on bike, live with parents. I know I’m lucky to be alive and just wanted to be out of hospital a year ago but now I want job back, girlfriend, house, holidays, new clothes, car... like all my friends and family but feel it’s too late now all through years of drinking and massive mistakes and can’t stop really living in the past when I don’t really see a future, ups and downs, depressing I’m sure I’m bipolar got he and my consultant thinks I’ve got ptsd from everything I’ve done and been through.
I hate this illness and get angry everytime I even see drink or it being advertised or promoted...
Definitely share your anger about advertisements. A slight extra tax on alcohol could probably fund a breakthrough cure for all liver disease in a few years. And the treatments developed there would be useful for all sorts of organ failure diseases. It's been too long with basically no advances.
Hi Jimmy. Have you considered finding out about doing some voluntary/ charity work in your area ? Sounds like you need something to get you out of the house and occupy your mind which could then possibly lead to a paid job.All the best.
Hi Jimmy, you are very welcome and I can relate to a lot of things that you are going through. Wanting everything back now or even yesterday is a big one .Its painful and frustrating that you cannot get your dreams back immediately but gradually you will get some if not all of them.
I am very sorry to hear about your relationship which is difficult but you will heal. I would consider looking after yourself to be happy. Relationships can be tough even when you are well.
Its early days for me and I am learning to try and be patient which is tough. I really feel pain and fatigue which is doing my head in. I too want similar aspirations to you but I know they won't be soon and need to accept it. I am having all these tests done and unsure of the outcome of these. It is a tough journey and you have done really well. Do remember that and keep going. Care for your yourself physically and mentally. Keep in touch.
I also hate seeing alcohol advertised or for real..it sucks!!
Be proud of your achievements. You have done so well.
I'm 9 years on living a relatively 'normal' life with cirrhosis. The only major problem I have is fatigue, although I sleep when I need to. At the moment I'm no where near needing a transplant, so please try and stop worrying. Attend every medical appointment and listen to your Drs, they are the ones who can advise you. Try and enjoy your life now and stop looking into the future too much, because who knows what it may bring for anyone. Take care
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