This forum: Just a thought! This a great... - British Liver Trust

British Liver Trust
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This forum

Poobear69
Poobear69
โ€ข48 Replies

Just a thought!

This a great forum, useful and a great source of support and experience sharing ๐Ÿ˜Š. When I first joined the site overtook my life? I was constantly on the site reading and then wondering and then researching. All very good you may think? Iโ€™m not so sure? After some time I realised that I didnโ€™t want to be defined as a transplanted but as the sober man that I am now. I do dip in and out occsdionally but do find that the site is rather clicey, almost like a club?

Just saying!

48 Replies
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Hidden
Hidden

It's certainly not for everybody. I'll admit I spend more time on here than I really should. Need to get a second job as I'm clearly not busy enough ๐Ÿ˜Š

Poobear69
Poobear69
in reply to Hidden

I couldnโ€™t agree more! On that note Iโ€™m off to look on Facebook, Instagram and witter ๐Ÿ™„๐Ÿ™„๐Ÿ™„๐Ÿ˜๐Ÿ˜๐Ÿ˜

Wass71
Wass71
in reply to Poobear69

Hi, I think I spend a few minutes each day looking at this site because I have become invested in peoples stories. I care about what happens to many of the members. They also make you realise you are not alone, as many of us will have similar experiences. I'd much rather use my time here than many other social media forums!!

But if you don't feel you need this then that's fine. Each to their own!!

PS, there are some very witty people on here, and its lovely when your day is cheered by a funny tale or remark!!

Best wishes

E

Hidden
Hidden
in reply to Wass71

Same here. I often fear the worst though when I don't read from people who are usually very active on here. Whatever happened to Miles ๐Ÿ‡ง๐Ÿ‡ง? ๐Ÿค”

Kate50
Kate50
in reply to Hidden

I was wondering that also looks like he has left the site ๐Ÿ™

Hidden
Hidden
in reply to Kate50

Kate50 and KLDN, Miles did leave the site. Admin removed a reply he posted on someone's post and he got a bit miffed about it and said he was leaving the site for good and left.

Kate50
Kate50
in reply to Hidden

Aw thatโ€™s a shame but thanks for shedding some light on it โœจ

Hidden
Hidden
in reply to Hidden

Um, I have his email if anyone has any questions. Phoenixโ€™s reply sums up the issue.

Poobear69
Poobear69
in reply to Wass71

Couldnโ€™t agree more ๐Ÿ˜Š

Hidden
Hidden
in reply to Hidden

Yup, looking for a first. Excited about a meeting early in January. Devil ๐Ÿ‘ฟ, idle hands or whatever Morrisey said.

Hidden
Hidden
in reply to Hidden

๐Ÿ˜…

ava2699
ava2699
in reply to Hidden

I found Foods infused Cannabis and its totally great! I tried frozen yogurt infused cannabis before and it really tastes good! and now, thereโ€™s new and something interesting! On the other hand, Ingesting Cannabis has a side effect that can lead you addiction because of its high dosage that youโ€™ll never know how much dosage that food has. By continually do researching, I came across in this article blimburnseeds.com/chocolopez

Hidden
Hidden

Its true. I was just thinking how many members are on the liver trust to how many of us are the constants in a conversation. Definitely a club of sorts. I think we all just find a relax being in a place where everyone is going through the same stuff. After time I think we all genuinely start to care about each other as an extension of family even though we have never met in person. It's almost our online version of the old show " Cheers". Without the booze unfortunately, fortunately, unfortunately etc.. ๐Ÿ™ƒ

Hidden
Hidden

Hi I am delighted for you truly. Everyoneโ€™s needs are different I guess. I for one can only speak for myself. I felt like I was drowning before I found this site. I do not write everyday because truth is I am not that knowledgeable on the subjects. What I can say is I have made friends most of which, have helped me more than anyone has since I was diagnosed with Cancer and Cirrhosis. I know I would not be who I am today without them. My health unlocked family. They donโ€™t judge, they offer support and friendship. The benefits for me were staggering. My heart will always be thankful. I just hope and pray should I be lucky enough to get a transplant, that I too can choose to give something back. As they did and still do for me. So thank you all you lovely folk. Happy and healthy 2019 to each and everyone.

The people on this forum helped me a lot soon after transplant. I found that the problems that I had were not unusual. Also my spirits were lifted by by the warmth and humour of the lovely, caring people on here. I only wish that I had known about this forum pre transplant when I was completely in the dark with my mind working overtime trying to decipher medical terms and test results. If I can now reassure or help anyone on here with my knowledge or experience (albeit limited!) then I am only too pleased to do so and will continue to do so. All the best to you. Alf

Well Alf, thatโ€™s truly wonderful that you feel that you feel that both your pre and post experiences and support help individuals. That was tbe point of the forum I assumed? To reiterate, experiences and support matter and mean so very much but offering medical advice also matters and should not, in my oh so humble opinion, given by non professionals. I am not so arrogant to think that because I have had a transplant that I have suddenly become a hepatologist over night? I think for anyone to do so is both thoughtless and dangerous. My concerns are for the more vulnerable individual on the forum that are not, perhaps, as robust as you and I! Again, a statement I will not alter or amend is I feel the site should offer experience and support. And the very best to you also Alf.

I have no intention of offering anyone on here medical advice if that is what you are inferring?

?

mncold
mncold
in reply to Poobear69

Hi Poobear69,

The administrators on this site are clear that some things should not be done and we occasionally get posts if they feel a person has been a little overzealous in stating things.

Many, in fact most, who post meds or treatments are very clear that nothing should be taken or done without the person's own doctor giving permission. I have on occasion learned things about medications that I can ask my husband's doctor about and can offer some side effects that aren't noted in the information packets one gets with medications - I find this helpful.

I also have found that there are people on here who have much closer relationships with others and chat a bit more with each other. I like knowing that adversity can create friendships, even if we are oceans apart.

Thank you for your opinion and best wishes for you continued good health.

Mary

Poobear69
Poobear69
in reply to mncold

Thank you Mary, and sincere best wishes to you.

I have been on here a few years now and I see different people getting on and then they move on or sadly pass away ... I hope I bring some hope to people waiting and maybe a giggle or two, but I honestly can't keep up with all the different convos going on anymore ๐Ÿ˜‚๐Ÿ˜‚

I have a few friends from here on Facebook as I spend more time on there but I don't feel left out of anything because I give my opinion/advice if people like it or not, I been through too much to give a shit, you either like it or lump it lol

In short I am saying you have got plenty to contribute just like everyone else and no one can please everyone all of the time, it's not always about advice just support even if you haven't got the foggiest what's going on

God that was a waffle ๐Ÿ˜‚๐Ÿคฃ๐Ÿ˜‚

Kate50
Kate50
in reply to jojokarak

Hi Jojo, howโ€™s you, hope you had a nice Christmas ๐ŸŽ„๐ŸŽ…x

jojokarak
jojokarak
in reply to Kate50

I good thanks my diet went well and truly out of the window this week ๐Ÿ˜‚๐Ÿ˜‚ I am stuffed and suffering lol

How has yours been? X

Poobear69
Poobear69
in reply to jojokarak

Put it this way Iโ€™m dreading โ€œweigh inโ€ at clinic next week!

jojokarak
jojokarak
in reply to Poobear69

I got one tomorrow ๐Ÿ˜‚ I probably going to break them I feel that heavy ๐Ÿคฃ๐Ÿคฃ

Kristian
Kristian
in reply to jojokarak

At my last clinic they actually had a speak your weight machine on trial as part of an NHS "efficiency" drive.

I got on and it said, "one at a time please".

jojokarak
jojokarak
in reply to Kristian

Hahaha you fat twat ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Kristian
Kristian
in reply to jojokarak

That's what it said next!!!!! :-D

jojokarak
jojokarak
in reply to Kristian

๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ๐Ÿ˜

Kate50
Kate50
in reply to jojokarak

Yeh crazy as usual 3 teenagers at home so madness all round just glad itโ€™s over for another year ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜˜

jojokarak
jojokarak
in reply to Kate50

Me too been with the in laws all day today I hate being on my best behaviour ๐Ÿ˜‚๐Ÿ˜‚

Poobear69
Poobear69
in reply to jojokarak

๐Ÿ˜‚. I donโ€™t have that problem as one are overseas ๐Ÿ˜‰!

jojokarak
jojokarak
in reply to Poobear69

Lucky you lol but seriously don't worry about the clicks they never last lol people are fickle beings and lots is misconstrued on here ... That's why my few good friends I have I have either had a phone conversation or met in person ๐Ÿ˜

Kate50
Kate50
in reply to jojokarak

Definitely my kind of girl I also get bored when Iโ€™m on best behaviour ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Hidden
Hidden
in reply to jojokarak

Ive been meaning to check in on you jojo. Hope all is well love xx

jojokarak
jojokarak
in reply to Hidden

I not bad thanks in limbo at moment waiting for consultants to make their minds up as usual ๐Ÿ˜‚

I think they dread seeing moi as I am not one to keep my gob shut they wanted to change me to sirolimus but I told them not a chance I know too many people who have had a bad time on them so back to drawing board for them lol

How are you? I hope you have had a nice Christmas xx

Hidden
Hidden
in reply to jojokarak

Giving em hell at the clinic again ru? ๐Ÿ˜‰๐Ÿ˜…

Glad to see your still tougher than titanium nails! Christmas was good. Very relaxing this year. How was your love?

And miles is a moody bugger I am sure once he picks his toys up and puts them back in his pram he will be back ๐Ÿ˜‚

Hidden
Hidden
in reply to jojokarak

I thought he was a moody so and so as well...

alfredthegreat
alfredthegreat
in reply to Hidden

And me!

I think you are right in that medical opinions/suggestions or heaven forbid diagnosis or treatment should ever be offered by forum members. However as long as you are just seeking advice or insight, maybe just wanting to share a problem or a concern, a sticky plaster to a niggle just so you know you are not alone until genuine medical advice can be sought then I donโ€™t have a problem.

On many occasions, especially when first diagnosed I looked for and asked for help to see if it was all in my head. True I was primarily on the hunt for Haribo but thatโ€™s a whole other can of jelly worms.

Use the forum for what it was intended, Health Unlocked.

Iโ€™ve made some great virtual friends on here.

Merry Christmas you mad bunch.

what does clicey mean.

Poobear69
Poobear69
in reply to grace111

I misspelt earlier as I ve had a very limited education, apologies if my awful spelling confused you?

Definition of clique. : a narrow exclusive circle or group of persons especially : one held together by common interests, views, or purposes high school cliques

oh dont worry in the very same but i just wanted to understand what it meant, thanks. wishing you well. im sure you still have a lot of experience to share with people who were in the same boat as you were before you had your transplant. im sure they would rather here from someone who had experience of a transplant than epxerience of the flu. its always good to give back. you never know when when you will be in the same boat again. I bet you were grateful at the time you needed them to. wouldnt you like to do the same for others. love grace xoxo

Poobear69
Poobear69
in reply to grace111

Thank you Grace, I agree with all you have said. I think that I opened a โ€œcan of wormsโ€ and offended some individuals sensibilities! Oh well such is life. Best wishes, Sam tbe Scott!

I can see where you are coming from Poobear. I think people just want to give advise and help others. Weโ€™ve all been through our own experiences with this disease and want to help people. We all need to be vigilant and make sure the person we are replying to understands that it is personal experience that we refer to and not medical training. Wishing everyone a happy new year ๐Ÿฅณ

Dont ever worry about spelling - I can spil well but cap at tipping! I found this site quite by accident, looking for less expensive holiday insurance. I couldn't be bothered with FB anymore or twitter but noticed this forum. It has shown me just how many ways our livers can be damaged and all the potential add ons too. I was totally unaware how serious fibrosis was, it was only searching for insurance quotes and finding it went up 10 fold that smacked me in the face! I have never been judgemental about alcoholics because my Dad's side had a lot, including my favourite uncle. I also worked with adults who were street drinkers. People felt afraid and intimidated by them. As I got to know each one it became very clear that they had back stories that would put a totally different prospective on their drinking/drug addictions. May sound hypocritical that the stick part of my job was to look at issuing ASBO's. My cirrhosis is down to prescription injections, for psoriasis. I am filled with admiration for those who stop drinking, A drug trial again for psoriasis caused me to contract EBV. I didnt have a problem with alcohol but found I could no longer tolerate any, even the smell. In December I finally got a second opinion and during the fibroscan, thanks to this site ,I recognised all the readings passed from the nurse to clerk were sounding like my severe fibrosis had moved up to cirrhosis. My GP agreed that I needed to go to a liver centre, he realised that all my bloods were showing normal despite fibrosis diagnosis. The clinic is a one stop place, everything done on the day, so the new consultant had everything to hand. I totally agree that we should never translate readings people have, or try to diagnose people. Just knowing someone cares and is here to offer support can make a massive difference to people. I saw first hand how families washed their hands totally of their alcohol dependent relative. Bringing about reconciliation was so rewarding, one of the big pluses of my work. I doubt that everyone on here is has a loving spouse and/or family. Feeling a sense of belonging must be priceless for some.

Hidden
Hidden
in reply to Radnor

Just swerve past Menโ€™s Health.

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