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British Liver Trust
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I wanna believe in God but cant

That was so lovely brings tears to my eyes I'm so hurt and lost I wanna see my 4kids grow up they are just babies so beautiful this illness hit me out of of nowhere and I'm so scared I mean they say be a man be cool I just can't. Bless u too I wish I could believe in something too but I don't wanna go to heaven my right now I created my heaven right here on earth with my beautiful children. Why would I wanna leave.im sorry I don't know where else to leave my pain I don't want my kids to see

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I've been there. 4 years ago, I thought my time was up. In fact even the consultant thought my time was up. He gave me months to live. It was a real shock and I lost it for a bit. I remember one occasion calling out an ambulance because I thought I was dying. But they took my vitals and said it was anxiety. Although I had a bad case of cirrhosis it was my mental state that was making me feel the worst.

And I had two kids 7 and 9 years old at the time. That was definitely the hardest bit, thinking they would be left without a Dad. I probably didn't sleep for a month. But I slowly got used to the idea of dying. I certainly don't believe in God and in fact got a lot of comfort from people like Carl Sagan.

Look up his "we are made of star stuff" quotes. Just knowing that the matter I was made from has been around since the big bang, and would continue until the end of the universe gave me some comfort.

I'm not sure of your own predicament, but I got on the transplant list, and had a transplant. But I had to push to get referred to Kings Hospital. Not sure why but my consultant needed persuading.

Good Luck!

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Thanks so much for your kind words infact I'm so sorry for taking so long to answer I had a panic attack after posting this and was simikar to you in the hospital because I thought I had a heart attack they said it was a panic attack too .

You guys give me hope praying for you Joe that the star dust God keeps us healthy :-)

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Hope you’re feeling a bit better now.

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Yes I actually do no chest pain today as I stopped thinking about havin a possible heart attack the mind is a very strong thing and positivity is so important are there any antideppressants you can take with liver cirrosis something to take the heavy rocks of my chest any suggestions I mean I had a hell of a childhood drank 45 percent yeni raki at 14 almost every week smoked about 4 packs a day pulled myself out of everything stopped smoking and drinking just with the love of my children they became my drug and last year on top of my live I made my motorcycle license and than this f.. disease comes for my neck not fair o well we gonna be the first 2 to beat this horrible disease ok!!!!!!!!!! I'm shure may I ask is your cirrosis alcohol related or hepatitis

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I saw on your other post you've got fibrosis maybe cirrhosis. I was diagnosed with cirhosis at 27 years. And it was pretty much last stage cirrhosis. The cause was and still is unkown. But i went almost 15 years before needing a transplant. As i understand it fibrosis can repair and even cirhosis, if the cause is removed can stabalise. I think (and understandably so) you are suffering fro anxiety more than liver disease.

Why do you think you’re dying? Have you been told this by Dr's?

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Hi, The feeling of complete lack of control over a situation can give rise to anxiety, and if not addressed can lead to depression. Unfortunately you have not given enough detail about what has led to these feelings. In my case I went to theatre for the transplant, suffered a major haemorrhage and required a transfusion of 25 pints of blood. The transplant was aborted and my wife was told I had 24 hours to live. I was blissfully unaware of the heartache I was causing as I spent 12 days in a coma. So I ended up with the same liver I was born with, hepatologist giving me a maximum of 6 months to live. Palliative care people asking me if I wanted to move into a hospice. The perfect place for me to start feeling sorry for myself. I made a decision that that wasn’t who I was and it would also not be fair on my wife, my grown up kids and my grandkids if I just plonked myself on my “pity potty” and stayed there. I too want to see my grandkids grow up, as unlikely as that may be I can only take things one day at a time. The moment I stopped projecting about the future everything became much more manageable. There is an old saying “yesterday’s history, tomorrow’s a mystery, so just look after things for today”. That is my mantra that I try to live by. I wish I could lie and say I never feel sorry for myself, but I do very occasionally but 15 months after my life should have ended I am still here, fighting my corner, doing things I could only ever have dreamed about doing. I am working my way through my bucket list and having a blast. I have been to Russia, I am off to Singapore and the Far East in 3 weeks time. My grandkids are all a year older, and I am not a burden on anyone. Everyday is a bonus, and having been given that gift it is up to me how good or bad that day will be. I know that I choose to have many more good days than bad ones and life becomes so much easier. If you have any questions please feel free to ask.

Ray

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Morning Ray. I've just read your reply and I'm amazed! The similarities between your situation and my own are incredible. You've almost described my ordeal verbatim. Obviously, there are significant differences but ... I agree with your attitude entirely and I try my best to look at things in a similar way. As you mentioned though, you occasionally have " dark days ", which are all too easy to slip into and it's a very steep, slippy slope if you do. I cope with a " one thing at a time " strategy, whether it be something as easy as a cup of tea or something that can be a bit of a struggle, e.g. hospital apps etc. Anyway, that was a great reply and I hope it gives the lad above a boost. Cheers.

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Thanks for your heartfelt kind words they really give me a little hope I kind of get the feeling from reading a lot that the people who make it to 20 years plus with cirrhosis tend to not worry so much praying for you even tho I don't really believe in the classical way.i have a question so they put you off the transplant list why ? And what if I may ask are the requirements to get on that transplant list i mean I'm in Germany but i think the procedure will be similar to you guys in great Britain i mean i have asthma and take light blood pressure pills will that be a no no? And another question how long did you have to wait till you almost got your transplant does it make a difference which bloodtype you are as I'm brand I think it's pretty rare thanks

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I waited 18 months. In the UK they use different criteria to decide who makes the transplant list. I have cancer and it is based on something called the Milan Criteria which measures size and number of tumours. Then your BMI and the prospect of you surviving the operation and the likelihood that you will live 5 years post transplant. I believe that the rarer your blood group the quicker you would expect to receive a new organ. Always remember that there has to be a doner for you to become a recipient.

Ray

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