Update

Hi everyone

As some of you know I recently joined the forum. I had a holiday in Devon recently and I put on a couple of pounds. Doesn't sound much but I was concerned it was going the wrong way. Good news I've lost the excess and having a lot of carvery veg on holiday, encouraged me to eat more veg since I've been home.

Just getting into the swing of finding I keep having hospital appointments keep cropping up. It feels really strange. I feel like my life isn't my own having to keep changing my plans. Had this a lot when I was doing a lot of in depth family caring, some things don't change. I feel sorry for my hubby though as his plans also have to change.

I can understand why so many of the people on this site warn us to be careful of the sites we go on. I bought a book on line that I thought was going to help with safer food ideas for my liver. I just wanted some recipes. I have to be honest some of it is interesting and potentially useful some sounds harmful. Overall I wish I had saved my money.

Take care, and for any who are old enough, I will steal a phrase from Hill Street Blues." Let's be careful out there".

Gx

29 Replies

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  • Be careful with books and the internet. You'll find tonnes of crap on YouTube for example, talking about liver flushes and liver stones.

  • I really agree.

    Even those that appear to be good can be problems and some quite scary.

    Most of my advice I'm getting from the NHS website and similar.

    I was looking for some recipes though, as I have to be careful what I eat and I wanted some ideas. That was how I found a book that I think on reading it was a ripoff and had some potentially dangerous ideas.

    So please be careful everyone.

    Gx

  • Thank for the advice, you are right to be careful. I can't understand why someone wants to rip people off when they are at their most vulnerable. Please take care. Lots of love Lynne xxxx

  • I agree Lyn_ma

    I think what often happens is that people often start off with good intentions. Then they either realise or someone else says you should spread the word and write an article or book and be paid for it. Then they hit the issues around that and before you know it the good information gets added to.

    I also think, and that is why this site is careful to remind us, that we should never generalise. I am slowly learning both what I need and what I'm capable of. What I need with my issues may be the same for some but not everyone even if they had the same conditions.

    Also there are those who for whatever reason will come up with all sorts of cures. Their reasons I won't go into. All I can say is as a family carer of a son with autism I saw some interesting ones in my time. My liver issues are showing me this is another area where we can easily be vulnerable to false hopes. It looks like when anyone is desperate to improve things for themselves or their loved ones they need friendly voices to say: Stop, Think, Check it out, Don't accept it at face value..

    Gx

  • ihi i understand your saying your life is not your own i to have lots of diff appointments at hosp and my husband has had to swop days at work use holidays and such just to take me as i have high anxiety on the thought of going out and could not do on my own but with three diff illness i spend what i feel like half of the yr at diff hosp i now make a joke of it only way for me by saying things like oh diff waiting room or they have painted it since last time sounds stupid but thats the way i cope if i am having off day appts coming thru thick and fast i hear myself saying oh give me a break someone but then i think i must have some fascinating body for so many to be intersred in it lol as for book just work it out yourself as in a little bit of everything because someone will find a prob so good luck x

  • Hi pattie1955

    I agree. I still work part-time and have appointments booked for my job. I have to either cancel my work appointments or find cover. I dare not cancel hospital ones as they can take so long to come up again or I worry I'm going to delay getting vital information about what is going on in my body. Also I get worried that some administration error will mark me as having failed to attend an appointment. I've already had that happen once and they told me they had discharged me. Fortunately I had the evidence that they had messes up. They had to Redbook yet another appointment for me. It was the one I got told I had cirrhosis when I was finally seen.

    It is really stressful at times. My husband is also worried about me and knows I tire easily. That means he comes as well. I have to be honest I think he also worries that I might not tell him something because I didn't want to worry him any more.

    Overall it is a nightmare. But one we can't afford to hide from.

  • its so stressful which we don t need xx

  • I agree.

    Gx

  • Hi...I'm Julie. ..suffer with cirrhosis and like you I find the correctrl diet difficult to find. Avoiding salt is quite impossible. Just returned from corfu to find out that mineral water contains salt. I tend to eat yoghurt for breakfast and eat what I fancy in moderation. I'm vegetarian so that's tricky. There are various diet sheets from this site available and I see a dietician who recomends lots of fruit and veg. I have a huge tummy with enlarged liver and spleen so there's not much I can do about that. Off to tenerife on 28th so have to adjust again as while I was in Greece my stomach swelled and went rock hard due to salt in everything. Do you have a dietician..I find mine quite helpfully. ..sorry to bore you..best wishes..Julie x

  • Hi

    Hope you enjoy your trip to Tenerife. I will be glad when I feel well enough to go on holiday!! Take care. Lots of love Lynne xxxx

  • Hi Lynne

    I hope you feel well enough for a holiday soon. Just listening to the rain outside on our roof, makes me envy those lucky people heading for the sun. I wouldn't mind but it sounds quite windy out there as well.

    I'm off to Sheffield to the spinal unit tomorrow. I'm heading up the m1 so I hope the weather improves.

    Gxx

  • Hope you go on ok. I live in Rochdale near Manchester and it's been raining this evening so let's hope it's dry for you tomorrow xxxx

  • Hi Lynne

    Sounds like the rain has slowed down. I think your wish might come true.

    If anything interesting comes up about my visit ill put a post up.

    Gx

  • Hi

    If you don't mind me asking, where do you live? Xxxx

  • I live in the East Midlands Lynne. Sorry I didn't reply earlier.

    Gx

  • Hi Julie

    I think I caught a button and just wiped my reply.

    Have a great holiday. Watch out for the bottled water and the salt. I don't have a dietician but I might ask for a referral.

    Remember if tummy wants to be seen like mine does, it has to have lots of Sun cream. I go to Devon, less chance of getting too hot. This year it was one of the wettest holidays we have had there. No chance of me needing to cream up this year on the outside and I can't on the inside either. Mind you the puddings, cakes and desserts in Devon push my won't power to its limits. But I was 90% good.

    Have a great break.

    Gx

  • Hi Lynne, a dietician should be part of your liver monitoring package. I'm going away with my poor sister aged 41 who has Huntingdons disease which is terminal otherwise I would stay here in Wales. I look 9 months pregnant on a good day! I will keep an eye on my diet whilst away, i start feeling il on the last of 7 days abroad so just in time for home and a quick recovery.

    Keep plodding on

    Julie xxx

  • I love Wales. My dad came from Swansea. My niece will be going there next year. She is having a gap year before university. Me I've always lived in the Midlands. But love our west coast.

    I know you are going for your sister, but look after yourself as well.

    Will you be offline while you are there or will you be like my eldest son still linked up to the net?

    Just thought back to when I was a teenager and mobiles didn't exist. I feel old. I better have a cup of tea to make me feel better

    Take car

    Gx

  • Hi, I was born in Coventry so a role reversal. At the moment I'm concerned with Ryanair and this situ is getting me down, but, if I get there I will make sure I take care of myself. Thank you so much for your kind words, Julie xx

  • Just getting ready to go Sheffield. Planning on meadow hall and then hospital. No point planning on buying any clothes yet as I still need to live search a lot of weight to do that.

    Glad it's not raining at the moment.

    Gx

  • Hi

    I do have a dietician and she said I'm spot on with what I'm doing. I phoned liver nurse to bring fibroscan forward, said there's no point as it only measures stiffness, said she will email consultant to bring my appointment forward from January

    I've left another message to say that I would still like scan bringing forward. I'm just so fed up of being in pain and only getting at most an hour's sleep per night!, She said I thought you'd been asked to try oramorph and I said I've been on that for 2 years and it hardly touches it, she shut up then!!!. I'm at the end of my tether, keep being fobbed off. Sending lots of hugs and stuff lynne xxxx

  • Hi Lynne

    Good work with the diet. I think I will start pushing for a referral to one. I think I will also ask for a print out of all my blood results in future.

    Other than pain killers does anything else help you with the pain?

    Take care

    Gx

  • A hit water helps sometimes. I just keep being fobbed off, we've all had enough

    I'm at drs now to see if he can help at all . Thank you for your support. How are you? Please take care. Lots of love Lynne xxxx

  • Hi Lynne

    How are you? How are thing's going?

    I got to Sheffield yesterday and I found the consultant very helpful. He helped me to understand the issues around my spinal cord injury and my liver a little better.

    Basically he reminded me what my liver consultant had said, that I had spent decades developing my nafld and cirrhosis. He also reminded me that it is still functioning at the moment.

    He reminded me that exercise is important, but not to put myself at risk of further spinal injury by falling over trying to do things that meant balance wise etcetera I was unsafe.

    Having had my kidneys and bladder scanned yesterday they seem to be working well. The endoscopy the other day came up no problems. I am just awaiting a further liver scan end of the month. Then back to my doctor for more check ups on my blood end of November. I do have a lot to be relieved about and I need to remind myself of this.

    He reminded me that it is important to look after myself but not to allow all my health concerns to take the pleasure and living a life out of life. This included a balance over worries about medication and pain. It is really hard to do though while I am trying to blend my different health needs into finding a way to still have as normal a life as possible.

    I know this is what we all have to deal with, and it is taking a day at a time.

    Gx

  • I feel just the same, thanks. Left another message with liver nurse to say I do want fibroscan bringing forward and had she heard from my consultant yet xxxx

  • Hi

    How are you feeling? Liver nurse hasn't got back in touch. Typical!!! I suppose she might have had appts sent to me, hopefully xxxx

  • Hi Lynne

    Fingers crossed 're the nurse. I've had a recovery day today. Felt tired, legs not functioning properly and a fussy head. Often happens to me when I over do it. Yesterday I knew I'd overdone things. Had fun though so knew today would be a bedbug day. Made the most of it reading slushy chick lit.

    I'll be back at work tomorrow and Friday. Working part-time makes fitting my health needs easier.

    How are you? It sounds like things could be a lot better for you.

    I hope anyone else who wants to joins in with our chats feels free to do so. I like to talk a bit about how we are feeling, but I get the feeling that you are a bit like me Lynne and sometimes like to talk about other things as well. I think a lot of us do. Helps keep the emotional balance having the safety net of people who know what you're dealing and help with that but also will talk about other things as well.

    I think I've mentioned before, sorry if I haven't, but my youngest son has autism. He lives in a supported living set up. His workers are trying to find some new things to amuse him and we are going to try to encourage him to join a drama group for people with learning disabilities. He is doing his usual not wanting to try it at the moment, but we are hoping he will have fun and perhaps it will help him to deal with some frustrations. He can be quite a ham actor when he wants.

    I will get back to my book now , guess what the girl gets the guy after some issues and they fall madly in love. These books save me having to work out the end. I will be checking my messages though for a while.

    Take care

    Gx

  • Any updates on the nurse?

  • Take care Lynne. Let me know how you get on.

    Gx

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