Just a thought!
This a great forum, useful and a great source of support and experience sharing 😊. 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? I’m not so sure? After some time I realised that I didn’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!
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 😊
I couldn’t agree more! On that note I’m off to look on Facebook, Instagram and witter 🙄🙄🙄😏😏😏
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
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 🇧🇧? 🤔
I was wondering that also looks like he has left the site 🙁
Um, I have his email if anyone has any questions. Phoenix’s reply sums up the issue.
Yup, looking for a first. Excited about a meeting early in January. Devil 👿, idle hands or whatever Morrisey said.
😅
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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.. 🙃
Hi I am delighted for you truly. Everyone’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 don’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, that’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?
?
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
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 😂😂
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 😂🤣😂
Hi Jojo, how’s you, hope you had a nice Christmas 🎄🎅x
I good thanks my diet went well and truly out of the window this week 😂😂 I am stuffed and suffering lol
How has yours been? X
Put it this way I’m dreading “weigh in” at clinic next week!
I got one tomorrow 😂 I probably going to break them I feel that heavy 🤣🤣
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".
Yeh crazy as usual 3 teenagers at home so madness all round just glad it’s over for another year 😂😂😘
Me too been with the in laws all day today I hate being on my best behaviour 😂😂
😂. I don’t have that problem as one are overseas 😉!
Ive been meaning to check in on you jojo. Hope all is well love xx
I not bad thanks in limbo at moment waiting for consultants to make their minds up as usual 😂
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
Giving em hell at the clinic again ru? 😉😅
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 😂
I thought he was a moody so and so as well...
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 don’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 that’s a whole other can of jelly worms.
Use the forum for what it was intended, Health Unlocked.
I’ve made some great virtual friends on here.
Merry Christmas you mad bunch.
what does clicey mean.
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
I can see where you are coming from Poobear. I think people just want to give advise and help others. We’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 🥳
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.
Just swerve past Men’s Health.
Worried about itching and fatigue
Other Facebook Website
Rifaximin and meat
post Transplant 
Don’t like this uncertainty 
