Hi, hope you are all okay. Just had a couple of nights in hospital. I knew things weren't right as I had been getting confused - thought it was beta blocker but my stomach had become huge. Came a point where I couldnt breathe. Leading up to this, friends were not phoning me as they thought I was drunk but it was HE and ascities. Phoned the out of hours doctor who called a paramedic then an ambulance came. Ex partner got a taxi costing £90 to bring my stuff to hospital. Waited ages in acute admissions and then got a bed in that ward. Drained 10 litres following morning and told me this is going to keep happening due to the state of my liver but no transplant news as yet. Follow up with hepatologist (had a gastroenterologist while in hospital).
I knew it was brewing, but friends turning their back on me as I 'didnt sound right'. Why couldnt they have called here to say 'hi' how are you.
I'm feeling better now, thank goodness. Happy to be home today
jules xx
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Hi. glad you got sorted. My partner had 3rd drain yesterday. Yes it will be an ongoing procedure but you will feel all the better for it. Like you we are still waiting on news about transplant.xx
Hi, thanks for your support - it takes a while of not feeling right to realise that medical intervention is required as at the time you just think you are ok when you haven't, like me, got anyone to tell you that you are not. So glad I phoned doctor as I didn't realise how seriously they view symptoms like mine. You have been through it with your partner so I empathise with you greatly.
Just glad I'm home in one piece having got rid of that awful fluid. I find the procedure okay having had it a long time ago providing they get the right place with the tube first time
I am happy to hear you have been taken good care of. In response to your friends letting you down, I know how that feels. They simply have no clue as to how this disease functions. This is what I have learned. Too, people are simply more involved with their own issues, most folks do not stop to begin to try to imagine how we are living. Its just a fact I keep learning to live with. Its shocking how much we have on us to just watch out for the signs of things becoming worse. This disease spins out of control off and on fast. I see my doc in two weeks, I am carrying a bit too much fluid right now, at times its very painful, usually end of the day, its the hardest. Glad you are home. Rest well. Thanks for your post, I will consult my doc about my fluid building, I might not have if I had not been reading your posts lately. Thank you.
Hi, I agree with everything you say about almost feeling 'dissregarded' in life. Each day we are hyper alert to any changes in our body - every pain or anything that is slightly different and it pre occupies our daily life and thoughts. It is the most cruel isolating disease and when I sit back and think, it consumes my daily living and will do as the cirhossis progresses. People just havent got the time or empathy anymore - its all about them. I'm glad you are going to get checked for your stomach fluid and please keep in touch.
This is a very kind note. Thank you. This is such a good place to share, we all seem to truly care and learn for and from each other here. Its a different world than the one I grew up in during the 50's. I laugh at myself finally for ever thinking people would keep an eye on me because of this disease, I am living with liver cancer. No one sends even a card.. No one drops by. I do have some very old friends long distance though that send email and its clear they are hoping I am around lots longer. But society in general is not at all like it was in the old days. I just had a nice cycle along the shore. Rest well...
Hi, Nostalgia - I remember simple pleasures living part time with doting granparents and a childhood with them was like something from an Enid Blyton book. I have invited endless people for a coffee at my place and I get "Im busy but I will come sometime". Because I look so well people don't understand why I'm at the chemist every 5 minutes or at the doctors or nurses having bloods done. Most comments are that I look as if there is nothing wrong with me so I just get on with my own company, don't expect too much and take each day at a time. Things were different years ago and I am 46 not a 50's child like you. The fact I am not permitted to work due to ill health also makes for resentment where I live. Best wishes to you and your uphill struggle, I really feel for you and know what its like, but like another member said that this forum is full of people who care and I have found that out for myself.
I just laugh, it is because we look well! I get that lots. It has been nice sharing with you. I just woke thinking, its so beautiful and I have no one to swim with on the island but my little dog. We people sure are strong, determined and independent. So glad I finally found my people. I can always check in here, learn lots and know I am not alone and its best to just do my gratitude list and go on about my day...
Hi jules same happened to me in hospital for 2 weeks I have a aciztes but stomach not big enough for.draining the HE.was.awful seeing things. And.very afraid hope you.OK. now
Hi again, I just replied to catfishjumpin and it explains a lot about this disease. Sorry you are in this situation. I understand the confusion as I had it, and people are quick to judge when you get mixed up and you just want to curl up in a ball and cry and say "its my liver not me!" I'm fed up with peoples trivial ailments that get far more attention than ones with a life limiting one like ours. Hospital has made me have a rethink about life in general. You keep well and have a friend in me - anytime
Here's to you feeling better now the fluid has been drained...totally agree about people not understanding or bothering to understand the effects of liver disease .think people think my husband has a cold by the way he gets nil sympathy empathy.....it's opened my eyes to some people and their lack compassion
Sorry your friends didnt understand put them in the picture now so they dont repeat the mistake.its funny i had flu...2 cards and 2 bunches of flowers for that but no concept of liver problems trying not to scare them off!good luck cazer.x
Hi, bought myself a bunch of flowers on Thurs morn from Aldi's to cheer me up without realising later that night I would end up in hospital but at least I had flowers to come home to!
Its just made me realise how lucky i am with my friends....not gloating just taking it in .we do live in a very small village and have 3 very good friends here also where we moved from 7years ago i still have 2 friends that drive out to see me.
I try very hard to be a good ear to them for their own health worries or money troubles rather than just taking about mine this makes a huge difference im sure.i also try to get them flowers or things...not big stuff as its a too way thimg.
More difficult for the men.o do.belong to a choir but sit to sing and quite often cant keep my eyes open !! But its my sanity and i have good friends there too.if you cam possibly even get to something for 1 hour a week no matter how roigh you feel and it will lift your spirits.explain the problem then ask aboutvthem they might surprise you..best wisjes cazer.
Hi, highlight of my week is going to Tesco with a lady who supports me outdoors, ie, gets me to hospital appointments, dentist and even though she is paid to see to me she is more of a friend but there are boundaries so I can't buy her anything. Have a lady in Manchester who I have a good relationship with but she hasn't been well at all. Where I live there is plenty to do if your 60 plus but mid 40's there are no daytrips or anything and I don't like getting on the bus on my own. Nice that you have the choir even if it is just once a week but I agree there isn't much for men to do. Here there is the Womens Institute, walking club, book club.
to tell you the truth you'd be better joining the womens institute. do you have any idea what they do.Arts, sports, leisure & science
Arts, sports, leisure & science
From competitions, astronomy, earthquakes, writing, photography and drama to walking, dancing and circus skills; the WI has something for everybody! yes they are a fantastic group and with older women who are more settled in their life you will make a lot more good sincere friends, iv been reading your posts and yes most people only care about pain when its there pain. i'v got used to that now and dont expect much from people as i was always in tears because i felt let down by friends, you dont have to be old to join the woment institute. you could maybe go with that friend who takes you to tesco or the dentist. just for the first few visitis and I'm certain you will enjoy it. its worth a try as its not good for us to be sitting alone. im on my own most of the time as i get very lonely indeed and i even pay old friends for help as they all want something. i just accept that as i need the help.it does hurt a bit im waiting on more help from the social work who are arranging it but at the moment, and its been like this for a while i just pay. i get my operation next week and i am hoping things will get better for me, they may not. i have chronic liver disease and not sure if i have cirrhosis. this operation im getting will depend on the state of my liver on how well i get or how quickly. i send all my love to you and if you and am here for you anytime. bless you. love grace.❤️
Hi,yes I can sympathise with you luckily did have to have drains but the Surrey and the unrelated speech did stop a lot of folk keeping Un contact.one soon learns who are true friends.i had numerous severe incidents with he,incidents which actually changed life in so many big ways.luckily I had a transplant in March from which I am recovering and so hope your turn comes soon.all thanks to someone very kind and a very good medical team and back up.wish you all the best
Hi, thanks for a nice message and congratulations on your transplant. You've been in a similar place to me. With peoples attitudes thank goodness there are some kind people out there. I find from personal experience the elderly have been very kind to me. I have noticed though a lot of it is lack of information on cirhossis and its complications that make people seem uncaring.
Hi, I am sorry to hear of your situation and I hope your son recovers from this ordeal and obviously I wish you much sympathy. We have no hospital with a dedicated liver ward. You are put on the gastro ward at the hospital I go to in South Wales. You are then transferred from south wales to Birmingham if you deteriorate despite treatment. I nearly ended up in Birmingham 3 years ago with liver failure and C Diff (hospital bug) but pulled through enough to stay in Wales. I have had sunshine since discharge so I have been able to sit outside - still sore on left side but at least I'm not uncomfortable and can breathe properly again.
Hi Jules! Good to hear you're back home. We only have each other to look up to for support cos those who don't feel the pain don't really have any sympathy for us. One only needs to have gone through the painful roller coaster of this ailment to identify with the likes of us. Have a healthier week pal!
With me jules I had to have a physticaric assessment before I could go home went in with sepsis then he started never had it so bad but for the hospital to treat me like they did proved they did not know much about HE keep well
Hiya. Thanks for your reply. Psychiatrists should make allowances for HE from my personal experience, and they don't. When I was in hospital 6 years ago, I couldn't go home without a psychiatric assessment and I was in for ascities. This time I didn't have one.
Hi, thanks for message. You've had it rough lately - are you feeling any better than you were. Glad I'm not still in hospital and also that it wasn't liver failure again. I had been nagging my GP about fluid and he said it must be gas in my stomach without examining me.
Hi Jules45 know exactly where you are at with the H.E. (I had a belly, knees, ankles full, but was never drained) Can I ask do you (on occasion) feel like your inhibitions have dissapeared? this happened to me (and caused me to upset everyone around me who did not understand my condition) I am wondering as I want to get a steer on how others feel, I think we all share fuzzy logic, inability to get involved often due to fatigue, inability to concentrate, write text that makes sense, remember instructions etc. but do you also behave innapropriatley due to having no or reduced inhibitions? (may I ask)
Is is possible to set up a H.E. section on here as a sub division of liver issues? (anybody who is not an HE sufferer know????
My story is too long for here, but suffice it to say it involved the police, the CPS and court, near disaster, but in the end all came out OK (thanks in part to director od BLF and my consultants and a kind barrister! ) my actions one day were most unlike my normal self!!!
I hope you can take some consilation from our (others) experiences, helping to put your experiences into perspective. (from a closish neighbour in Denbigh N Wales)
Hi, thanks for your reply - admittedly lost inhibitions years ago when drinking but without drink I am an extremely shy person/prudish. I would for instance never use this forum to turn to if I'm feeling extremely depressed as I have a social worker I can offload to. I wouldn't go on here at all if I had a drama occuring. I have an Auntie who tries to understand and is very matter of fact and apart from her I have only a couple of friends really to lose my inhibitions with. When meeting or speaking to them I am a listener and dont offload, I take on their problems instead. I was brought up when children should be seen and not heard. In my old days I would tell the whole world my problems and emotionally drain them but those were my drinking days. I am where I live a secret sufferer of this illness as most people here talk about the latest bug going around.
I've been through similar to you in the past but now I wont say boo to a goose. Talking about bodily functions freaks me out for instance.
A very thought provoking reply and well received but even my auntie thinks liver cirhossis is just a minor ailment.
Hi, when I said thought provoking I didn't mean you had said anything out of turn. To elaborate, yes, I agree that there should be something on here for people with HE but the problem is sufferers don't know they have it unless told by others and if you have limited friends you may never know. I was recently forgetful, I posted on here about putting the Lenor in the fridge. My rule is never to log onto computer if I am having a fuzzy head day, and I generally isolate myself.
Hi I'm relatively new on this forum but I think your idea of a separate section for HE is a brilliant idea. My partner has scoliosis and has lots of what I call fuzzy days but last year he had a really bad episode it was the first time and i was scared to death i didn't have a clue what was wrong with him i first thought he'd had some sort of stroke i didn't know what to do so i phoned for a ambulance and he was admitted for a few days he couldn't remember a thing about it
Hi, sorry to hear about your partner. With regards the separate section for sufferers of HE it was a forum member named PCBnPBC who came up with the idea on his post to me. He is very knowledgable and sent me a great deal of advice. You should find his post if you scroll down all the ones I had. Best wishes and you will find the people on here are extremely kind and sympathetic - whatever the problem, big or small.
Hope things improve for you and your partner
Best wishes
julie
So many truths in the comments!
I don't admit to feeling unwell any more as most are just not interested.
After nearly 4 years of struggling I am going for transplant assessment again on Monday
The only high point game when I had to cancel a break because of the assessment, the holiday company did not give a dam about the reason but Tesco refunded the vouchers I used to get the break so I could save them as a pure gesture of understanding.
Thy helped me gain some faith in people out there
My thoughts will be with you, good luck and I hope you soon get some good news
Hi David, I just bury my head in the sand with this illness and pretend it isn't happening to me. It is my only way of coping. Publicly I am fine, privately I sit and think and a wave of terror sweeps over me as to the future but I don't let it show. I tend to be happy go lucky if I go outdoors.
good luck with your assessment, sorry about the lack of reimbursement which isn't fair. It's like holiday insurance, I was going to go away with auntie this year to Tenerife and with my existing conditions it came to over £700 and that was cheap compared to most.
Look after yourself
Best wishes and thanks again
julie
I've read these posts with interest, I have just been diagnosed with early cirrhosis and don't really have any idea what I have got coming. There is lots about what happens when it's late stage but I can't find anything to inform me of how quickly it will progress and what will happen to me along that route. Can anybody enlighten me or give me any tips?
I also get the friends not being sympathetic as I have got this disease through Rheumatoid Arthritis which is another silent disease and people seem to think there is nothing wrong with you because they can't see the pain and stiffness.
I hope you guys all get some relief, at least we all have each other here!
Hi, I have cirhossis and osteoporosis and both illnesses aren't visible to the human eye so no empathy for either. With you question about progression of illness I just go along with what hepatologist says which isn't much. I used to be seen twice a year by gastroenterologist now its every 3 months with hepatologist so that has told me I have worsened plus the results of my last doppler scan (every 6 months). I havent actually asked him how long before transplant. I was told 6 years ago that I would need one within 5 - 10 years but I haven't asked since.
Sometimes friends just don't understand because we haven't shared with them early enough. Don't forget though how hard it is for people to know how to respond or give you support. Just tell them the odd mail or even sympathetic noise shows they care. I know I have a friend with lung cancer and I try to make contact on a regular basis but I know I won't necessarily get a response - but she at least knows I care and am there even at a distance for her (we live hours and sometimes continents apart). We have to acknowledge that people do have their own lives and worries too and we don't always get told of what they're dealing with (even if it pales in comparison) because they know we've all got enough on our plates to handle so it can distance us from those we care about and who care about us. Stay in contact with people and definitely on this site - lots of new friends here for you. A.
Hi, some good advice thank you. I appreciate that being open with people about how you feel can be useful, but not where I live. My auntie is the only family I have and she thinks cirhossis is a minor ailment. Therefore I try not to make friends as the ones my age have all had children, married and I have done neither. At the age of 46, friends are hard to find but I do come on here, but never in a crisis. Lovely people on here who actually care so I won't be leaving.
I'm sorry your friends weren't much help. Maybe you need to tell them in plain words exactly what you are going through and the effect it has on you. Take care xxx
Hi, thanks for that. Friends are very difficult to make at my age but I may meet someone at some point. I have 2 friends at very early stage and I am mindful that they have lives of their own and at no point do I involve them, nor my auntie in a crisis. With hospital I was calm on the journey alone and calm in the hospital alone then ex partner who knows me inside out arrived with bag and then back home. I didn't tell either friend I was going in as it was getting late and I don't disturb people especially if there is nothing they can do.
so sorry to hear you've had to go to hospital, but pleased they sorted you out and that you feel more comfortable now. I know exactly what you mean about meeting people or making new friends. I moved back to Somerset after 15 years in London, and I have no friends here, when we first moved I was working, so would drop the kids at school and go. That meant I didn't meet other parents etc. Now I have been unable to work for 6 years and don't see anyone here apart from my mum and husband/kids. I know I'm lucky to have them, but I really miss my friends. Having texts is not the same as sitting around chatting, getting things off your chest.
At least as far as our health is concerned we have this forum, and people do understand so that's a positive.
Hi, we are in the same boat. My problem is that I moved a lot leaving friends behind and then they had children and let a totally different life to me. Bumped into an old schoolfriend who is a lifeguard trainer and she was coming out of the leisure centre. I gave her my mobile and I know she wont ring even though we were joined at the hip in high school. She hangs out with a load of her friends and go on pub crawls but it would be nice to have met up for a coffee.
So, I just hang out by myself with my ex coming to visit on a saturday.
best wishes
julie
I feel so bad for you Julie, it must be tough without friends. Thanks for your words, until I see a consultant I really am going stir crazy wondering what is going to happen to me. I am trying not to tell my family yet until I know what to tell them. I'm also having troubles with neighbours and have made the decision to sell up which is tearing at my heart too. Right now I just keep crying, it's like my life has just been totally shaken out of recognition. Thank goodness I have a great man by my side, if I was still with my ex husband I'd have been left to my own devices and told to get on with it! Thankful for small mercies eh!
Hi Cathy, Im sorry you are feeling the way you are. When I lived in my previous house with ex partner my home life was bad and I had the neighbours from hell. I was coping with my deteriorating health and I ended up becoming a recluse. If I were you I would confide in someone so you have someone to talk to. This forum is a great place to turn to for friendly advice about your worries. Thankfully you have a nice partner. I cried when I lived in my old house but eventually I moved to where I am now. When you see your consultant you will know more and it will help you to put everything in perspective and you will have more information about your health worries. Your lucky to have a great man by your side.
Hi, I feel very moved by the amount of messages to me about my recent health worry. My situation hopefully will be reviewed upon seeing hepatologist in about 4-6 weeks or earlier due to this latest relapse. I'm on 15 doses of medication per day (I counted earlier on) and that in itself can't be doing me much long term good. Its a wonder I can spell let alone reply to posts in a coherent manner considering the tablets in my system.
Lets hope for something good to happen this year, in the meantime I'm just carrying on as normal as possible living with side effects and lack of understanding by people. At least the members of this site are good souls who genuinely care about others despite having problems of their own. I hope you are okay and wish you well and thanks again for your post.
Heres a laugh for you all....when i was first diagnosed my brother said have a glass of orange thats what i do when im poorly!!!! And he meant it! I cant even drink the stuff because of stomach ulcers.i think this just sums it up brilliantly. Ha ha best wishes cazer.xx
That is funny and it is true that people think that way with the best intentions
julie
Good luck and thanks for your reassurance x
I had the very thing happen today, my boss asked if he was keeping me up! I'm afraid I snapped and explained to him how the medical conditions I was suffering from were making me exhausted, I think he felt a little embarrassed to say the least. He's lucky I went in at all, I was only there because it's salary day and I didn't want my colleagues to miss out. Grrrrrr
Hi, well done! Are you feeling any better today - I hope so. Good that you had a word with your boss. At least he or she know what the matter is and it's good that you went into work. Hooray for payday for you. Keep thinking good thoughts and that life will eventually get better x
Hey Julie, only just read all this, so sorry.. I've been thrown in the deep end back home and with the baby!!
I know how lonely hospital feels. Even though I have lots of friends and family I had 3 ambulance trips in the last few months on my own. Everyone was looking after the baby on my behalf, which I appreciated but there was no one for me (I know sounds selfish) . Weekdays in Newcastle hospital I saw no one usually, part of the reason so lovely getting cards from you. People my age also don't quite understand the illness and I don't really expect them to really, not sure what I would of said vice versa although I like to think I'd be able to be more helpful now if I knew anyone going through long hospital spells.
Have you found anything else about transplant? I know it's scary but the thing worse than transplant is not being able to have one when you need one due to being too ill. Witnessed a few people in hospital just trying to get well enough to complete the assessment successfully. Even I 'failed' the bike test first time round.
Wish there were more alternative therapy for people suffering from cirrhosis. It seems you can only get entitlement to such treatments if you have cancer but both conditions are life threatening. I was lucky enough for my social worker in hospital to arrange a massage with a charity (I think they were called lifespan) to help with back pain during my long stay but I got the transplant before they could come to the hospital.
Hi Alicja, yes, I know the isololation you suffered being so far away from home and I am so pleased that you are back with your gorgeous baby, her big sis and your partner having gone through so much. I still can't believe you have gone through transplant and have come out of hospital. You know I am your friend as we have proved that distance sometimes is just mileage, thats all. You have inspired me as before I became your friend I was petrified of transplant and your story has made me braver. I have the message in the card you sent in my purse to read when I feel down or dissheartend. I'm doing okay but at the moment it is one tablet more each doctors visit then a tablet to counteract the side effects. Have to have a doppler scan on my feet and legs next monday to check the pressure as I'm in such pain and the doctor first said I would have a cortizone injection in each foot but now he has changed his mind. I am just so happy for you to be well and catching up on 6 months or more of your life with your baby and her big sis.
Just a waiting game with me so I keep taking the tablets
Hey how are you feeling? How come the feet and legs? I've still got numb feet like constant pins and needles and doctors have no idea of the cause, in fact it's on my discharge notes. My wound is healing quite bad... It's not infected but it's open and gunky, I can't even look at it as it makes me queasy. It's so sore but I know it's a big cut also have a bit of a tummy bug or something. The district nurses and gp aren't doing much to help me. Apparently as my mum can put me in a car I'm not classed as housebound so won't get any nurses coming here to help with dressing the wound etc... Something that surprised me after the transplant is that I got no information on what to do after, I didn't even know where the weekly clinic was. No info on what to eat or what to do if things go bad etc... I've got a procedure on my nose for nosebleeds on Tuesday so back in Newcastle for a couple of nights. Aww I'm glad you liked the card, I'm sure more people worry and think about you than you might know, just difficult to actually be there with you. Just looking at the replies on here, so many!! you are definitely not alone with how you're feeling sometimes, just keep staying strong. Xx
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