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British Liver Trust
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Home!!!

Hello everyone.

Hope you all as well as can be.

Dr just been round, doesn't know why I'm sore, he can tell I am sore but he can't do anything about it, just go home and put with it!!! Love and hugs to you all Lynne xxxx

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Hi Lynne, sorry to hear you are suffering even more. It's the same answer we're all getting these days. Take care and do what makes you feel better😢 gentle hugs .xxx

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Thank you so much. Love and hugs Lynne xxxx

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Lynne,

It’s great to hear that you are getting home but it must be frustrating that the cause cannot be found. I hope that the sore feeling eases, put your feet up and take care of yourself.

Mark.

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Thank you, in even more pain tonight. Take care Lynne

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Hi Lynne. Hope that they've discharged you with adequate meds for the pain. Best wishes. Alf.

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Hi

Just on the same meds but did think having different ones might affect my liver more. Take care Lynne

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Urgh, how annoying, dont over do it... put your feet up in the garden maybe ? Hows the weather where you are? Gorgeous in sunny Norfolk🌞

Lots of love xx

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Hi

Thank you so much. How are you this evening? Love and hugs Lynne xxxx

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Hi Lynn Im very well thankyou. Can't believe its 9 years ago tomorrow that we lost my hubby Andy. Still lots of happy memories, have put the rubbish times to bed, and be spending time at the coast with the current hubby and the kids.

Hope you are feeling better xxx

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Not really, in more pain, thank you for asking. Just got to put up with it haven't ?

Hope you have a great time. Love and hugs Lynne xxxx

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Good luck for wednesdsy, hope they sort this out for you very soon.

Laura xx

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H

How are you feeling tonight?

Thanky you so much. They said it will hopefully get rid of pain from around liver but nothing else, at least if that's successful that is one less pain. Please take care. Love and hugs Lynne xxxx

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Fingers crossed for you lovely 🤞

Xxx

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Thank you so much. Love and hugs Lynne xxxx

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Hi Lynne, I too am so sorry you are still in so much pain. Are you on any pain medication? Surely this doctor has referred you for further examinations? I really hope they get to the bottom of your condition hun.

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No, he hasn't probably cos I'm under a specialist, I'm not sure. I've got this electrodes thing on Wednesday so will see how that goes!! Take care Lynne

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Sorry you're suffering lynne. Hope ur feeling better soon xx

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Thank you so much. Love and hugs Lynne xxxx

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Ah Lynne, poor you, that's so horrid for you!! I know how being in pain when no one can explain or fix it is soul destroying.. I really hope it starts to ease. I also think worry makes pain worse, which I appreciate isn't something you can necessarily control. I find if I'm happy and with people I love it's much easier to cope with, I hope that is the case with you.

Take care, will be thinking of you!!

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Thank you so much for your kind words. I do already do that, it helps the emotional side but not the physical side. Take care Lynne

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Hi Lynne, too bad they can't find anything, reminds me of that old joke, patient says doc, it hurts when I do that, doc says don't do that lol. Have you tried biofeedback, it's a breathing/visualization technique that might help you relax the muscles involved. I second the idea of hanging out with friends and loved ones, and laughing, that makes sense to me until they can sort it out. Feel better soon! 😘🙏

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Thank you, I already do that but don't feel any better, unfortunately. It does help emotionally though. Take care Lynne

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Hi Lynne,

Good to hear you are home!

Hope things start to clear up soon.

Best wishes,

Mary

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Thank you so much. Love and hugs Lynne xxxx

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Hi Lynne, good to hear you’re home. Hope the pain is manageable. I know how supportive you are of others, lovely to see you get support back. Thinking of you. Andy and Samantha.

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Thank you for your kind words of support. Everyone has been great. Love and hugs to you both. Xxxx

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Hi Lynne

I'm a little late in responding as only came across your note and replies a few moments ago!

I keep hearing about so many of you suffering with awful pains for one reason and another! Like I said to Alfthegreat in a PM that I would give anything to be able to remove peoples fiscal pains ! No one on this planet should ever suffer with all today's medical technology which I know like most that it's all money related !!!😣!

I cannot add much more that others haven't already said except here's another hug from someone who also cares!

Love Trish 😘

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Thank you everyone so much for all your kind words and support. Everyone had been brilliant. Please take care. Love and hugs Lynne xxxx

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Oh dear Lynne, to be sent home with no answer to your pain is not good enough. The docs should not just give up like that. There are pain killers that are liver friendly if taken in the recommended doses. Is your pain localised? I am going through a period of pain just now. Mostly liver related, and being in constant pain really brings me down. The only place I can get relief is in bed with an amitriptyline, but of course I can't stay in bed with too many jobs to do. Try heat pads, or if muscle pain ice packs, I find they can help a bit.

Praying for some relief for you 🙏🙏

David

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Hi

How are you feeling tonight? take care Lynne

My pain is all over cos of the conditions I have. What are the liver friendly pain meds which I can ask Dr for?

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Hi Lynne, How is your pain today.Many thanks for your concerns. I still have upper rib cage pain all round, and now my shoulders are joining the party. Knee pain is just arthritis, but my heat pad helps with this and my shoulder. I might see if I can get the GP to prescribe Voltarol, my sister swears by it. Sorry for the slow reply, I go to bed at 8pm, as it's the only place I am pain free at the moment. the pain meds my consultant said were OK for people with liver disease were amitriptyline (good for sleep as well), paracetamol, tramadol and cocodamol. My Son has pain issues following a motorbike accident many years ago, and he was referred to a pain management clinic, maybe you could try this.I hope this helps, and you can get relief soon.

Take Care,

David

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I am 6 months post transplant and I'm still getting pains and numbness around my scar site. It's very debilitating and I'm getting very fed up. Same response as you - "it will get better".

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I had a hysterectomy 10 years ago so i have a 6" scar from my naval down. The area around it is numb and the scar still itches but its a small price to pay. Things could have been a lot worse.

6 months is still not long and even if it never goes away, Im sure over the coming months it will gradually improve. Still early days after such a huge op.

Xx

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Thanks for the encouragement, good luck

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I don’t think my numbness will ever go Oldred, to be honest - 6 inch diameter “dead” area just to right of tummy button - now 3 months past the date the Consultant said all the nerves should have healed. Ah well, as others have said, at least we’re here but I do empathise completely with your issues!

Miles

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And Sorry Lynne I meant to add something but you know what I have to say already!

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Hi Miles, I will just have to be patient and less of a wimp!

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Haha you're not being a wimp, just getting used to living a whole new way of life and the feelings and niggles that your transplant op has left you with at the moment. You will get through it and it will mprove and settle down xx

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That is totally unacceptable! More likely its because its Bank Holiday and they need the beds! Heard some not very good things about the place, You need to get a second opinion, no one wants to be in hospital but sending you home because they are inept is appalling.As you know I researched the hospitals I could travel to. I settled on Royal Liverpool and so glad I did. Your GP would support you and it is allowed under chose and book. I was seen within 6 weeks, given a fibroscan on the day before seeing a consultant.My Gp was baffled why i had normal bloods but told I had severe fibrosis. I know you are pretty resilient regarding beig in, having Fibro sucks. My colon was detached at the side. Where the large and small intestine join. It swung about as you described Last time it couldnt and yes it was mega painful. I feel angry for you as you may have guessed. Its made more difficult because when your in a lot of pain its difficult to fight your corner. Truly hope you are helped by your GP. Gentle hugs and love to you Hazelxx

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You are so kind.

I said to him so I'm going home still in pain, he replied we can give you more meds if you stay in. I already have Nash caused by meds from my drs so I didn't want to damage my liver even more than it is already. The nurses were brilliant but I found this Dr very patronising. Love and hugs Lynne xxxx

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Same for me but it was Methotrexate. I am ont he same pain meds prescribed for my fibro. Liver consultant said buprenorphine patch is acceptable and 75mg of amitriptiline at night. Stopped ibuprofen and just 4 paracetamol a day. He said its a balancing act because being in a lot of pain ruins quality of life, I used to be on solpadol but my GP said I was dependent. Went cold turkey for 2 weeks then started on the patches. Like you I dont drink so dont have that to contend with. Royal Liverpool is a treck but one straight road M62. Vets dont discharge animals if they even think they are in pain. You definitely need a second opinion. You cant be treated without a diagnosis. The intestines are part of the digestive system like the liver. My first symptom was constipation I couldn't even pass wind. The pain followed along with feverishness. I then vomited and wont describe that part. It wasnt food . Truly hope come Tuesday your seen by your GP xx

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Being in pain it should read.

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So sorry you're in so much pain - hope they can help you on Wednesday xx

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Thank you so much. I'd never heard of this treatment of inserting/injecting electrodes into me. My Dr said ask loads of questions, success rate etc as you don't to be worse than you were when you came in!! Well that gave me confidence (not)

Please take care Lynne

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Your doctor's advice sounds reasonable, but as you say, it doesn't really inspire confidence....It's not a treatment I know anything about! But you never know, it might be really helpful xx

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I hope so!!🤞 please take care Lynne

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Hi Lynne. How are you doing? Hope your pain has eased. Alf

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Hi Alf

How are you and yours?

I'm not brilliant, thank you for asking. I've made myself go out today even though I didn't feel lime it but I knew I'd have a nice time when we got there. Had a few bits to do then we went for a carvery, I was able to a small amount, wherea Dave(hubby) got the large one us two girls the small and I didn't even finish that!! I can't understand why I'm putting weight on, can the liver do that or would it be my thyroid? Thank you for all your support and to everyone else too. Take care Lynne

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Hi Lynne. We are doing OK thanks Lynne, Baby grandson visits us today :-). It's good that you were able to get out. Lovely family time to take your mind off things. As far as weight goes, My wife always moans that having an underactive thyroid makes it difficult to lose weight. Having said that I've noticed that the amount of calories that woman can consume and remain at the same weight without losing any weight are not big numbers. A bowl of cereal for breakfast, a sandwich and a small supper and that's used up the calories for the day. If a man were to have that he would lose weight. As regards the liver and weight. I was gaining weight in fluid ( acites) when I was ill, but that was visually obvious as I had swollen legs, stomach and at one point my arms too and round my face and neck. Best wishes. Alf

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Thank you, Alf.

Dr did say my stomach is distended but never thought to ask him if I'd got ascites. I did ask my own GP the other week and he said no, he did a little test by putting one hand in my stomach and tapping that hand with his other hand.

Just keep thinking about Wednesday and these electrodes things. Please take care Lynne

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Hi Lynne, Hope what they do tomorrow eases that pain. It's really miserable living with constant pain. They should be able to tell you tomorrow if you have ascites. I'm at my liver clinic this afternoon. This is the first one since December. I had an interim app. with my original liver specialist and bloods done in march and everything was fine so hopefully all will be good today. Best wishes. Alf

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Thank you so much Alf. How did you go on today? Take care Lynne

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All was good Lynne. Specialist said that after a CT scan in 3 months they plan to decrease some of my immunosuppressants and then decrease them some more after another 3 months. That will leave me on quite a low dose which will be great if my liver is happy with that. :-) Thanks for asking.

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That's great news. Take care Lynne

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Hi hope you are feeling better. My hubby keeps getting a sharp stitch pain right hand side under chest. Is this the liver not working ?

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Hi

Hope he feels better soon. I'm no better, thank you for asking. I get that same pain all the time I have Nash with some fibrosis. My consultant told me my liver is that enlarged that it has stretched the capsule around it which causes the pain. Nash was caused by all the meds my Dr has given me over the years . Love and hugs Lynne xxxx

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