People's thoughts??

Moi again :-D my brain on overdrive now I must be bored lol. Anyway I have been reading my old posts on support group and also healthunlocked and also reading other people's as well. I had a thought (dangerous I know) but I feel for people who are not computer savvy and also ones who are not as upfront as some of us.... I was thinking about putting something together a leaflet /booklet of common questions asked pre and post transplant and also maybe different people's perspectives on the many reasons we have had or have cirrhosis. I also think it would be useful for colleges /university students especially on alcohol abuse.... I just think we get confused by the jargon from doctors and consultant's and hearing from people who have experienced it would be a good way to explain it.... Also should do from partners and family, friends points of view! Would love to know what people think??

27 Replies

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  • sounds like a great idea to me Jo πŸ‘πŸ»

  • for some reason my name has been changed from sheri44 πŸ€”πŸ€”

  • and ive been here since may 2013 wtf?

  • bk to normal now I dunno what has happened

  • Gremlins x

  • Lol computers hey x

  • Hi jojo, I think that is a fab idea! I as yet as you know via messages have not had a tx and I'm hoping I never will .I do know a bit about the liver from doing an online course not long ago .like myself and I have noticed recently some do not know or understand what happens when first told you have cirrhosis. I knew what it was but not told anything. When I had ascites I did not know it was my liver failing. I did not understand half the things that I know now; so yes it's a very very good post hun x I would be up for any info required. I would like to know about all the pre and post tx details and what the process is just incase. πŸ˜ŠπŸ‘

  • Brilliant millie I would love to read and hear what you would think about what to put in and also your story x. I will send you my email address if and when you would like to :-)

  • That's fine jojo ,I will give you my email address via pm so I can have a really good think on what to put in , oh and my long 9 yr journey so far I could write a book πŸ˜‚.so yes please send me your email πŸ‘

  • Good idea x I know so little about my diagnosis and what it would mean for me and my poor family. Now I have had my transplant I know even less lol but if I can help anyone with my experiences and gained knowledge I will . X

  • Great idea. I know many people with cirrhosis from so many causes its quite astounding and some quite unique, I may be able to help a bit on that part.

  • Brilliant news I will inbox you my email address and when and if your ready you can send it to me :-)

  • A wonderful idea I am 5 years in an would to add my rambling of the journey up to now on the transplant list

  • I think it is a great idea and would suggest web-based rather than book based so that it could grow/change as issues emerged. I would be happy to contribute.

    Mike

  • I agree with the website version of course but the initial reason I thought of a booklet was because I met a lady this week who had been alone her whole journey as she doesn't like using the Internet and I am sure she isn't alone, also it took me a few years after I had been diagnosed to find out there was any support networks. I am just going to hopefully get this booklet together first before an Internet based one :-) x

  • Great idea Jojo. Perhaps BLT can review it and enable easy access to it via their website!

  • I have already spoken to someone at Leeds to review it once it's put together. But great idea about your suggestions x

  • That sounds an excellent idea. I feel people would feel more comfortable with that than jargon filled professionals. It would look at the person rather than the diagnosis. The number of times I've heard "this is Mr Parker, he's the cirrhosis case"! A new dual diagnosis service has been set up by our local mental health service and they could benefit greatly. I would gladly give my story and experiences to benefit others πŸ‘πŸ‘

  • Thank you and any input would be highly appreciated I will inbox you my email address x

  • I think its a good idea too x

  • Really good idea. X

  • Thinking about it, I know I have cirrhosis and that's about it. I only ever see Sarah, my bbv nurse. I'm going to see her again today so hopefully she'll put me more in the picture as long as I ask. X

  • Great idea, let me know if I can help in any way 😊

  • Anything will be a help 😁

  • Great idea, if you can cover all aspects.

    Don't forget though, that us men often suffer awfully with other (embarrassing) symptoms which are rarely discussed but often worried about.

  • If your talking about sex?? I brought that up on one of my posts a month or two ago a lot of us loose our sex drives I am still waiting for mine to return. And I would definitely put something in about it 😁

  • I remember that post Jo. I gave some input on that one πŸ‘πŸ»

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