Thanks for the comments. I was fortunate in having excellent care both before and after transplant from my local General Hospital and the transplant centre, and I am concious that having hopefully put the liver disease behind me, I'm speaking from hindsight and may be seeing things through rose tinted glasses, but I'm happy to try to offer any advice or support that I can.
Everyone's approach is different and everyone's circumstances are different. I'm sure there's no one right way to deal with having liver disease, just the way that works for you.
I found out I had liver disease about a year before the symptoms really started to show, and had time to get used to the idea before it started to affect me seriously. Others might suddenly find themselves in a position where they become ill almost overnight and before they know it are waiting for a transplant.
All I can really comment on is how liver disease affected me. How I dealt with it, I can only really describe as a combination of acceptance, compliance, optimism, denial and stubbornness, a lot of the latter. I accepted that I had liver disease, and that there wasn't much I could do to affect the outcome other than take care of myself and let the doctors do their work. For me, that meant there wasn't any point worrying, and if I didnt worry I could concentrate on other things, easy to say maybe, but that's me. If I was told that there was a 75% positive outcome and 25% negative, I fully understood the 25%, I just assumed I'd be in the 75%. Luckily that's how it turned out. I know I have the generosity of an organ donor to thank for that, along with some very skilled and dedicated surgeons, doctors and nurses. My role of walking the dog, checking the salt content of all my food and remembering to take my medication and resting seems small in comparison, but it's those small things that make all the difference and make the doctor's job of fighting the disease a lot easier.
I could list all the bad things I went through, but one thing I found when I had liver disease, was that it was different for everyone, some people had the same symptoms as me, others didn't have all of them, some had more and worse. A forum like this is great for people with liver disease, but don't spend time worrying about what might be round the corner or reading too many of the horror stories on the internet, as from what I've seen there is no guarantee what symptoms you may, or may not get.
Now, post transplant, I work, I exercise, I rest, I still watch what I eat, I don't drink of course, and the dog is enjoying much longer walks and runs these days. The doctors don't need to do much more for me now other than monitor me every few months and give me a flu jab each autumn. I'm responsible for my own health again now.
I can't bloody believe it!
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