I am new to this site, and over the past few weeks Ihave really found it to be a big source of inspiration and support. I was diagnosed in April 2010 with quite a late stage disease, and have considerable liver damage. One transplant assessment after a "blip" saw my liver recover, meaning I was not put on the list, Unfortunatly I have had a relapse now nearly a year later. This week I had a call from the hospital after having my last set of varicies banded and BC's done, to say they are definately referring me back to the transplant unit...........although hopeful ( am I??) this does not mean I will go on the list, let alone, get one, I guess I need assessing again.
However this post is to say I had sent for the Liver north support DVD out of curiosity in the meanwhile, and got it in the post today. I have just watched it. I have to say it made me cry............ but in a good way ( is that odd to say??). What an excellent piece of work, I have a smashing friend who has agreed to do the three peaks next year to help raise money for PBC, and do you know what................I think I may make a DVD for my local area for distribution ( well not me to personally do the DVD ha ha it would be rubbish if I did it)
What kinda things would be good to have on there do you think?? Am I way off the mark - the Newcastel DVD is good, is there another I could do that could add to this..................any ideas greatfully recieved
x
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busylady
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You should call the PBC Foundation because they would be able to give you great advice on what would be useful to include if you made a video. (maybe testimonials from other people with PBC?) Would be interested to see the DVD you saw to see what it entails. Where did you get the DVD from? Hope you get on ok next week. My mum had a transplant aged 45yrs which transformed her life. (I am now 47yrs-Stage 2). Take care. X
I also suggest to contact the PBC Foundation Edinburgh. They are highly experienced in PBC issues, plus all their information is backed up by the Medical Council that supports them, so you can trust that information.
busylady,
Great idea, making a DVD! Thanks for the information about the website, I've sent for the DVD. Appreciate all the information and best of luck to you.
The PBC Foundation is brilliant. I got a very useful book from them last year, 'Living with PBC'. It gave some info I already knew but there were also things I didn't know. To be honest can't think of one now - memory is a pain but you could ask for one. They may ask for a donation but its all for the good of those of us with PBC. Hope all goes well for you, busylady. Regards, M (
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