People's thoughts?? : Moi again :-D my... - British Liver Trust

British Liver Trust

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People's thoughts??

jojokarak profile image
27 Replies

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??

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jojokarak
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27 Replies
sheridan41 profile image
sheridan41

sounds like a great idea to me Jo 👍🏻

sheridan41 profile image
sheridan41 in reply tosheridan41

for some reason my name has been changed from sheri44 🤔🤔

sheri44 profile image
sheri44 in reply tosheridan41

and ive been here since may 2013 wtf?

sheri44 profile image
sheri44 in reply tosheri44

bk to normal now I dunno what has happened

Emmabskin profile image
Emmabskin in reply tosheri44

Gremlins x

jojokarak profile image
jojokarak in reply tosheridan41

Lol computers hey x

Millie09 profile image
Millie09

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. 😊👍

jojokarak profile image
jojokarak in reply toMillie09

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 :-)

Millie09 profile image
Millie09 in reply tojojokarak

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 😂.so yes please send me your email 👍

Gaynorlowson profile image
Gaynorlowson

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

Bermuda1 profile image
Bermuda1

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.

jojokarak profile image
jojokarak in reply toBermuda1

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

jojokarak profile image
jojokarak in reply to

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

Geffy22 profile image
Geffy22

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

jojokarak profile image
jojokarak in reply toGeffy22

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

GTFC74 profile image
GTFC74

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 👍👍

jojokarak profile image
jojokarak in reply toGTFC74

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

jules45 profile image
jules45

I think its a good idea too x

Emmabskin profile image
Emmabskin

Really good idea. X

Emmabskin profile image
Emmabskin

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

raqs67 profile image
raqs67

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

jojokarak profile image
jojokarak in reply toraqs67

Anything will be a help 😁

GoldArrow profile image
GoldArrow

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.

jojokarak profile image
jojokarak in reply toGoldArrow

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 😁

sheri44 profile image
sheri44 in reply tojojokarak

I remember that post Jo. I gave some input on that one 👍🏻

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