I joined aver six months a go and sadly, most of the stuff here is all of us sharing down points of our disease. It has gotten to the point where I have been having nightmares and getting sick of symptoms made up in my mind. It is time for me to give this site a break.
Get well all: hugs
Before you go this is a picture of me 5 months post transplant on top of a mountain in Wales, getting back to doing stuff I hadn't been able to do for some time. Of course its not all sweetness and light but the light at the end of the tunnel can be bright and shiny, you just have to walk through the dark to reach it.
I’m sorry. Sometimes I’m worried too; but it helps me to know others are having similar or worse experiences and that they are willing to share. You need to do what is best for you.
All i'd say is don't be disheartened. Every day, with proper diet, reasonable amounts of even gentle exercise, the body can repair itself slowly every day. That and a positive outlook is important i find and prayer, but if not overly religious just basic meditation. I'm hoping to train for and walk parts of the Camino for the second time in 3 years this summer, assuming i get the light training in. Cirrhosis anyway, like most liver problems is manageable with simple life adjustments. Keep the faith and best of luck...
With every sad post there is a good one hopefully to give the rest hope it does get better .... We have all felt the same way you are now it's not an easy road but always always a bucket of hope.... I used to read posts before transplant and I felt better as horrible as it is to say ... I felt better because I thought at least I am not that bad or I feel like I am surviving a lot more mentally than them but I tried to give them a boost its just about support as no one knows how bad it is apart from others who are experiencing or have gone through liver disease .... I hope you just have a little break and come back we all need one x
Why do people feel the need to announce they're leaving. Why not just leave? Hmmmm
Myself, I think comments - and 'farewells' such as this - are useful reminders to the rest of us to try to up our game a little, and maybe be even more proactive and supportive.
If we are in a fairly safe place ourselves, it is sometimes easy to ignore 'cry-for-help posts' that maybe don't fall within our symptom/case/diagnosis zone/expertise. Yet I'm constantly reminded of the need to 'try' to be more supportive to those who are down: especially when it is obvious that too many of the responders are being a bit too bleak.
I don't check out this site that much, as I mainly respond on the 'PBC F' site, as well as sites linked to other conditions I have/am at risk of. However, one of the things that I've noticed is that (NB it seems increasingly) a lot of respondents do just reply to 'calls for help' ... not by giving help and support - or even sympathy - but by just talking about their own bad state of affairs. I realise it must be a symptom of how bad things are for so many of us, that we are tempted to have this: 'You think you are bad, but just listen to my problems... ' type of response, but I don't imagine it's helpful for the person who is feeling down enough to post a 'Help Needed' question.
It's just my opinion, but I think that for someone to announce that they are leaving, is a powerful message to the rest of us, pointing out that the site doesn't always work in the way it is intended to.
So , for me, that's a good enough reason for someone to announce they are leaving. Hopefully it will encourage some of us to be even more sympathetic and understanding.
Well said Gritty. That’s why I try and inject some humour into my posts. The whole world doesn’t run on “wo is me” syndrome. There is something else out there called life. Someone told me about it once . I think it may have been the 3rd time I refused death to take me away. Crikeys, that was only 2 weeks ago now. How time flies eh?
I do know how serious mine and other people’s situation is but really! Less of the doom and more of the sharing. I even asked the liver trust if they could create an off topic board for us to have a cuppa and a chin wag to each other in but they didn’t want one.
Cheers,
Brett
find it strange that you have found that... maybe you have happened to interact with people who are not at all upbeat... or maybe its the questions you are asking... ive found most people very supportive and ive found helpful to have feedback on grey areas.
its each to their own obviously... just do what you are happy with.... certainly not worth being on here if its making you worry more...
best wishes cazer
Sorry to hear you feel this way
This forum actually made me insist my doctor refer me to hepatologist.,and my am i grateful for that. .each day i never know how i am going to be but i carry on regardless. Worrying will not change anything.. i wish you all the best
Hi meteocal,
I'm so sorry that you feel like this, and that the site hasn't been helpful for you. I don't use this site often, so I can't judge, but I have noticed that on other sites I use, there does seem to be an increased tendency for some responders to just talk about their own problems.
I'm sure it must be really hard to be on the receiving end of such messages, when you were hoping for support and advice. However, as you can see from the responses, there is understanding and support out there.
I wonder if things have got worse because the access to good health advice is becoming increasingly difficult. In the UK we have the NHS stretched to breaking point, while in the US there seem to be more posters, on here and other sites, talking about increased cost of insurance, or that it won't always cover the latest treatments/medications.
What ever the reason for lack of support, please do remember that you can always talk to the lovely advisors at the BLT for help and advice - see links at top and side of this thread. Also, depending on quite what liver condition you have, is there a specific site on 'Health Unlocked' that perhaps deals exactly with your condition? I mainly use the 'PBC Foundation' site on 'Health Unlocked' ... but obviously that's only helpful if you have PBC (primary biliary cholangitis - it's an autoimmune condition that attacks the liver)! However, maybe there are other 'liver' sites that will be more exact for you. Again, I'm sure the 'BLT' can give you advice on this, so do please contact them.
I hope that some of this helps in some way. Also, I think it is good that you have voiced your feelings, but make sure that you do try to find some other supports for yourself. Thinking of you.
Take care,
Gritty
I’m sorry you feel the forum doesn’t benefit you and certaintly in the early stages of illness I wouldn’t have come back or felt the need to announce my leaving.
However I came to it when I was final stage and decompensated. Most of us feel ill every day but you get used to it. The day after an ascitic drain I feel great and only then realise how ill i had been feeling recently.
Having a community who understand your situation means I don’t have to burden my family and friends with my current ailment. You benefit from others experience and can help others if you wish.
Keep an open mind this forum might help later on your journey or look for other sources that suit you.
Alternatively ignore your disease in blissful ignorance which is what I did in the early stages
Best wishes
Sadly meteocal, these liver conditions are serious issues and people who are sick don't always feel like smiling, they just feel a need to share their experiences and seek help and advice, and be reassured. Occasionally, in the cold light of day, we have to realise that these conditions are sometimes life threatening, I personally have a dark sense of humour which has helped me through, but there are those out there who aren't so lucky and who have nowhere to turn. At least on here they are with a group of people who really understand without being judgemental and who can offer support, understand and help.
These are just some of life's realities that we are all having to face up to. But it's also about looking to the future. Kristian is a prime example. Me myself have got my crusade about raising awareness to others. My liver donor didn't die in vain, that is something to rejoice, and not be melancholy about.
Richard
I can understand you completely. When you are in your darkest hour you look around searching for some light, but don’t always find it. Miss positive Pollyanna here always believed in finding help to cope with my husbands recent diagnosis, felt certain there would be support groups locally. I have friends and relatives who have suffered from cancers and heart disease and have found great solace from McMillian and Cardiac group sessions giving them confidence to move forward and cope with their compromised lives, but despite my calling PALs at hospitals within travelling distance, there is very little. There are some lovely positive people on this site but it is very easy to just keep hooking in to the not so pleasant bits. I know i’ve given myself sleepless night as well. It’s finding your own level and peace of mind to cope and we are still searching too. Don’t give up, everyone on this site has been there. Take care. JX
I found this site when I became very sick with acute hepatitis & I felt very alone. It's been very helpful to me. My hepatitis fixed itself after 7 months of living clean of painkillers & I was lucky because it turned out that I didn't have fibrosis or cirrhosis like I believed I had due to the severity of my symptoms.
When I saw a hepatologist at the time he came across to me as cold & uncaring. In retrospect I wanted reassurance and he came across as coldly objective which I now understand was him just doing his job without getting personally involved. He kept asking me how much alcohol I drank as if he thought I was hiding being an alcoholic from him but my problems were caused by too many painkillers not alcohol. I worked out that I had drug (painkiller) induced hepatitis which accounts for 40 percent of hepatitis cases in adults over fifty years old (I'm 66). The hepatologist still doesn't know what was wrong with me. We agreed to give my liver 6 more months to fix itself & if it didn't then I'd go back & see him. I don't expect to have to see him again because I can tell I'm back to normal despite still having to confirm it with a blood test.
In my darkest times I was shocked to discover how little anyone cared including a half-brother who had little sympathy when I told him how ill I felt. A neighbour offered to give me his nail gun to shoot a nail into my brain if I wanted to end my suffering! He might regret making light of my predicament. He weighs about 140 kg, has a huge belly & has taken anti-depressants & painkillers daily for many years. He had a FibroScan about 7 years ago that cleared him of any major liver problems but that was 7 years back. I'm betting he has fatty liver that could turn into non-alcoholic steatohepatitis (NASH) which is a serious condition that has the potential to lead to cirrhosis, liver failure, or liver cancer.
Reading some of the stories here made me feel less alone and that there were others in similar situations to me. One story in particular stood out of a woman living alone in a large city with no support who is in need of a transplant. I felt for her because in my darkest hour I thought I might need a transplant & like her I live alone & I wondered what was to become of me. I hope she's okay.
I don't have religion to fall back on but I believe that we have a soul & that there's a lot more meaning to our lives than many people think. For anyone that's interested I debated this issue on another forum. My forum name is mareke in the debate.
I am sorry to hear that you did not find the support you desperately need. You have made your decision and we must respect that however, the forum will always be here if you should change your mind.
Take care
Cirrhosis, stage 4 and AIH... Hate what predisone is doing to me. Is this all worth it? 
NASH....What the heck is going on? Can someone please help explain all of this to me?
Sorry all, this is a long post by way of introduction and first diagnosis
Thankyou to my new Friend that has just walked into my life and said to me. I'm here for you,and proved it.Her name is Lynne. ❤ Mine is Glo.
Blood draw without gloves and swab(alcohol) has this happened to anyone? Is this normal? 
