Hey everyone, hope you’re all enjoying the sun - except for the post transplantees!!! Here’s a question for you.....
I suffered quite a lot with cramp pre transplant. In all sorts of places! Fingers, legs, calf muscles and thigh muscles. Used to drive me mad!!
Well, post transplant it all seemed to disappear. Yippee!! But, now 6 weeks on, it had started up again. Not as severe as before, but annoyingly it’s there!! Anyone else had experience of this sort of thing??
Andy
Andy,
I had exactly the same problem, I am now 10 months post transplant and hopefully, no longer an issue. It lasted infrequently for about 3 months for me, we are all different.
Good luck, it’s a slow journey but hopefully everyday will be better for you.
Best wishes,
Mark.
Hi Mark,
I really can’t complain about my progress. Feeling totally fantastic, and have done since the moment I got out of hosp.
Yeah the cramps are annoying - but a small price to pay!! Keeping out of the sun is a bit harder!!
Thanks for the feedback. Hopefully it will all disappear!!
Andy
Hi Andy, (and Mark)
We can and do enjoy the sun - just carefully. I have a sun proof hat with neck cover, this combined with factor 50 plus sunscreen means I don't miss out on the good weather. Same as last year I'm off to Crete in September, late in the year to avoid the full heat of a Cretan summer.
As for the cramps - at just six weeks, you'll be at the transplant clinic quite soon, so just let them know. Did you ever have cramps pre liver disease ? Not everything is liver related !
Jim
Hi Jim,
Yep, spreading factor 50 all over, still getting a tan though!! Wondering if I’ll get told off by coordinators when I’m next back in b’ham!! On two week consults now, but back on thurs so will ask about cramps then.
You mean the liver isn’t to blame for everything?? It’s bleedin ruled my life for the last couple of years!!
No, no cramps pre liver probs.
We’re off to Scotland and Ireland at beginning sept, those two venues should prove risk free!!
Cramps pre transplant are definitely liver related. I used to get horrendous foot cramps in the few months leading up to the transplant but thankfully been fine since.
Hi Huggy
Not exactly same but I had psoriasis really badly before TP but then three weeks after it was completely gone 👍. Then as they reduced tablets one by one it very slowly has come back ☹️. In my case I understand (am told) that it is the reduction in the immunosuppressants that’s allowing it come back ☹️.
Hope you sort at the clinic!
Miles
Hey Miles, I had a localised bit of psoriasis/scratching damage on my leg which has now disappeared!! I had it for years - even pre diagnosis, but my magical new liver seems to have kicked it into touch!! Hope it doesn’t come back!!
Last clinic the surgeon said that as I grow stronger, my body will fight the new liver more - so upped my mycophenolate!! So far I seem to be quite free of side effects ( except the bleedin cramps!!). A.
Never heard of mycophenolate! It’s funny how different Hospitals specify different immunosuppressants - I’m assuming it is an immunosuppressant! But glad your psoriasis has vanished 👍👍
Miles
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Hi
Post tp I always have a problem of stiffness (no sniggers pls remember the mods) in my fingers and hands. Here the weather has been impossible, yesterday 38 and today only 32. My hands, knees and toes, yes toes(!) have been so stiff and painful in the past few days it’s been a right nuisance. I have rarely been outside but slavered on 50 sunscreen. Long sleeves and a long dress or flowing trousers with floppy hat are my uniform.
Isabelle xx
Hi Isabelle2
I've just read your note whilst hiding out of the sun myself which is for another reason!
I'm presuming theres nothing your GP or consultant can give you to relieve your stiffness! Can I ask are you drinking less or more fluids with you mentioning your worse over the last 2 days!
I'm thinking of you and sending you a hug !
Trish
Water ok. I’ve had this before in extreme temperatures. Hot and cold. Got it checked out and Tac is the problem. If a tp person doesn’t take Tac (immunosuppresseur) then they wont last long! It’s just a pain and I’m used to it. It’s better than being dead though
Isabelle
Hi Isabelle
It's the quinine in tonic which is good for stiffness and cramps !
I stuffer with cramps and muscle spasms which Im.putting down to the lack of quinine ! However recently stiffness has appeared in a few fingers of my right hand causing my middle finger to now curve slightly which I cannot straighten. Well hopefully this nothing for me to be concerned about !,
Take care and keeping hydrated!
Love Trish
There are a few non alc g&ts drunk in our house. I think it might be more than that. Anyway I am pretty used to them now.
Hiya Isabelle, fear not, I’ll not snigger (we’ll not loud enough for mods to hear!!) 😜 I am covered in factor 50, sadly!! Never used to use any before, always quite tannned!! As for the dresses, my other half hates it when I put them on...she says I look better in them than she does!! 🤪🤪
Andy.
Where on Earth are you with a temp of 38?? Not in sunny Blighty!!
Nr Paris. B hot over here. I knew I’d get jokes from the lads who love a fancy dress!
Your not at Disnry are you? My hubby's granddaughter just started working there this week whilst on hols from Uni! Hence your fancy dress comment! 😄 She must be b roasting!
X
On the A4 half way between Paris and disney
Yes v hot but brill work experience for her cv!
I'm all dressed up for a charity summer ball and leaving here in next 10 mins and it's so blummin hot! The men are worse off in black tie dinner suits! Its 32 and to much for me!
Will think more on the ice cream idea as I think.it would be brill if could be achieved! I might have a go st making some as cooking is a hobby ! ❤ lol
Xxx
I’ve seen your piccie isabelle - you should be safe as houses - you certainly keep your body in the shade! 😁👍
Miles
Hi Huggy/Pilo
I only know a little about cramps which is not TP related! Normal every day cramps can some times be relieved by drinking lots of Tonic throughout the day and before bed which you may already know. I wonder whether you and Pilo could give it a try especially with this hot weather, maybe you both need to drink a little more whilst this weather persists! It's only a suggestion !
Its 31 degrees here in Shackerstone and I'm on the tonic😄lol
Have a fab weekend
Trishi
Hi Trishi,
Yes had heard of the tonic water remedy before - even tried it and found it to be totally disgusting!! Can’t believe it had the word ‘water’ in the title!!
I’m sure ice creams were invented as a remedy for this weather!!
32 in a sunny Wiltshire!!
Andy.
Hi Huggy
There are now various flavoured tonics which are quite nice to drink with some ice and rasberries added. Plain tonic is not so nice ! Well it was only a suggestion!
I too prefer a nice ice cream especially one covered in chocolate 😄😄😄
Thanks for that Trish, I will give the flavoured tonic a try. I get terrible cramp most nights 😥😥😥. Annie says she's never seen me get out of bed so quickly 😁😁😁
Temperature yesterday in sunny south Bucks 34.5C measured on our patio. Much cooler today, and good weather forecast all week 😎😎😎 I bet you were Bloody hot at the Ball 😰😰😰
David
Hi David
Firstly for some apparent reason I did'nt suffer as much with the heat as much as my daughter and her three friends at the table! The portable fans we"re getting a full workout🤣
Try drinking tonic throughout the day but if poss try drinking a glass before bed too! I'm.not guaranteeing it will solve your cramps as I'm not a TP patient but do try to help you guys if possible!
Please let me know if it helps or not as others may be interested to know too!
Rock Chick written on her hand not to forget to guitar 🤣🤣🤣🤣! Lol
Rock Chick signing off !!!☺️☺️☺️
Trish, I'm not a Transplantee either ( too old 😥😥, I have been told), but will take your advice gratefully. I'm glad you coped with the heat at the ball.
David Old Rocker🤣🤣🤣
Oh poo! I must start keeping a record of everyone medical history 🤣🤣🤣. This blummi brain fog is playing havoc 🤭🤭🤭! Sorry Lord Lou😁 You are Lord Lou ????? Joking 😂😂.
Have a great Sunday!
Rock Chick signing off as I must get up! 😁😁😁. Hubby's up before me for change! Daughter and son in law still asleep .
Trish, you can't be hung over, so you must just be a lazy sod 🤣🤣🤣🤣, or it might be something in the air😁😁😁
David 😇😇😇
Hang on in there you wee bugger!
I got to bed at around 4.30 -4.45am when most of you guys are chatting with each other😄😄! Well I know of some you are😄! I woke around 7.30 ish then spent ages catching up/replying to loads of wonderful messages which I,'ll let you read up on! Lol 😂😂.
I'm now dressed nicely in sage green and Rock Chick has her 💄on as she always likes to look her best 😂😂😂! Hope this made you smile!
I've since cleaned the messy kitchen up after the late night party here after the ball, so I think I deserve one of these now1🙌🙌🙌🙌lol!
Well Lord Lou keep on smiling! Rock Chick out for lunch before heading home later, that's if daughter manages to crawl out of bed and her sprained ankle is not to bad!
Bye for now Dancing Queen
Some typing errors amended ! Lol
Oh Dancing Queen, you naughty girl😁😁 So, as you were already at home, did you give the chauffeur the night off 🤣🤣 Does the vicar like sage green then?🤣🤣 And less of the "wee", cheeky. I was a rugby player, and am at present 5' 11" according to my records, so have shrunk without noticing 😁😁, and quite bulky still (just with less muscle 🤣🤣) I'll check out your posts made whjile I was slaving in the garden ( I swear it's getting bigger 😁)
I can't help but smile with the funny mob on here.
David, Garden Designer
Hi Rugby David/ Alf
I never thought of you as an ex Rugby player in my mind but I'm impressed and I bet so Anne! 😁 so no more wee bugger!
Just arrived home after the Dancing Queen did a little shuffled her bum in the car whilst trying to sing to Billy Ocean Caribbean Queen, Sheryl Crow All I Wonna is to have some Fun and Foreigner singing Waiting for a Girl Like You which made the 1 hour 15 minutes journey back home much more fun😅!
The cleaning earlier was at my daughters home in Shackerstone Warwickshire which is a beautiful chocolate box village with a steam railways and canal with lots of boats! Stunning place for walks and biking of course!
I too agree we do have a funny mob here which I think is blummin amazing as we seem to make each other laugh!
On the Rock Chick News front ! I now have my🎸🎸🎸🎸🎸🎵🎵🎵 so let the racket begin 🔊🔊🔊🔊
Bye for now Lord Lou!,🎸
Hi dancing Queen, love the music choice 🎶🎶🎼🎼. I stopped playing amateur rugby, at 25 years old, when a bad tackle left me with a trapped sciatic nerve, still gives me gip to this day. I will let you into a secret, I am a "Steam Railway Enthusiast", I'ii get me anorak, there I've actually said it 🤣🤣🤣. Been on the Severn Valley Railway many times, Even had a silver service meal aboard once 😋😋😋. Don't forget the chords, A,D & G learn them first and they'll give you loads of songs to play.
David (Rock Star and railway buff, just like Rod Stewart 😁😁😁)
Wow you do surprise me at every moment ! I too gave been on numerous Steam Ways and twice for silver service lunch with friends on the North Yorkshire Moors Railway!
I've also been on the Severn Valley Railway at Kiddiminstet for lunch too 😁! All were treats for some special friends visiting us.
When I was a kid I used hang over railway bridges to watch the steam trains go under which I totally loved! So dont be ashamed of being a steam buff as its lovely!
I had a lovely friend called Bill who also loved stream trains and travelled all over the UK to take photos of each train! Lol!
I just love to hear about everyone's passion and to view photo's of there projects! I seriously do take great interest in each person's hobby and miss updates very much of there projects which some may not realise! So please keep me updated !
Cheers for cord update again. I promise to start asap in between making pine cone Christmas Trees which Alf and his lovely wife are waiting to see photos of! 😁.
Oh well Spiritual Church calling so I'm off to pick up my friend Sue shortly ! On my return I must print info off for GP tomorrow morning. Appointment at 8am !!! Fingers crossed for Sky Dive sign off! Get praying to the spirits ....lol
Bye from Rock Chick
Trish, I hope you get the go ahead for the Sky Dive, I will say a wee prayer for you. I was chatting to Alf as you do, about my live steam garden railway, that is sadly no more (knee's stopped behaving themselves) That part of the garden is now a play park for my Grandkids. I have a large pine tree in the garden with loads of cones around it. I just throw them in the garden bin when they fall, after the squirrels have finished. I also have a Japanese White Pine tree over 40 years old and only 14 inches high. It's a Bonsai 🌲🌲🌳🌳, another passion of mine. Pine cone Xmas Trees.... Mmmm!! sounds interesting😊😊😊🎄🎄🎄.
Davidii
Oh blummin heck! Will you stop spooking me out! I've alway liked miniature Bonsai Trees but never actually got around to buy one! Your so lucky having this type of knowledge. I nearest I get to trimming anything is hedge cutting my small box hedges 😁😁 which is tough on the old back !
Oh well ladies and gentlemen! Nighty nite as I'm about to work on my computer for a short time then
Into bed !
Sweet dreams ALL
Rock Chick x
Hi David, Pre transplant I used to get terrible cramps. I would get out of bed and walk about the bedroom most nights, sometimes for hours. In fact I think that some of Michael Jacksons dance moves were copied from me! LOL. Tonic water is a drink that I like and drank it along with flavoured water all the time but it didn't really work for me as far as cramp was concerned. I saw my doctor about quinine tablets. They did them in 200mg and 300mg per tablet (you would have to drink more than 2 litres of tonic to equal one 200mg tablet.) He said that the tablets would take up to 2 months to work and there was no guarantee that they would completely alleviate the cramp. I decided not to go down the tablet route as I thought my liver had enough problems without chancing more ( I had entered liver failure at that time) So I just carried on as I had been doing. Maybe if the cramp is not severe cramp then tonic water may help. My cramp ended when I had my transplant. All the best. Alf
Alf
I'm pleased your cramps where relieved by your TP! 😁😁😁
Nighty nite to you both!
Love Trish xxx
Thanks Alf, mine is the sort that makes you jump out of bed PDQ. It normally goes after 30 minutes or so of walking around stretching my calf muscle. LIke you, I'm worried about overloading my liver, so I will try the flavoured tonic.
Dsvid
The cramp in the thighs, calves and hands was something that I suffered from for years and just gradually got worse up to transplant. It was a few weeks after transplant that my wife pointed out that I hadn't had cramp for some time. I had so many other aches etc to think about post transplant that I hadn't even realised!
Trish - as you know I drink three litres of water (not tonic 😁) a day already! I don’t want to sink 😁 (or swim 😁)
Miles
Oh my 😔 Sorry ! I don't remember everything you've mentioned to me, so I'll take this reply as having my hand truely slapped 😆!
Well done on the 2 or was that 3 or 4 litres a day you mentioned🤭🤭🤭? Whoops the PBC brain fog hasn't cleared yet which does keep happening now and then !
Whoops I forgot to sign off! ! Brain fog kicked in again 🤔🤔🤔Lol
Trishi
3 litres! 😁. Brain fog rules OK 😁. Why can’t you remember everything? You know I always do 😁
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Cheers for the clarification Miles😁
However I think I'd already replied with my H2O remark which passed in cyberspace 🤣🤣🤣!
There's no quinine in water which sonetimes helps with cramps !
Enjoy your 3 litres of H2o !
I do! No actually that’s a lie! But at least I follow that instruction unlike the sunscreen one ☹️
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Point taken on sunscreen ! 😄 plus thanks for telling the truth😄hate lies like the D word!
Glad you always remember things☺️
Bye !
Rock Chick
Do they do a tonic with ice cream?? Or would that be blasphemy?? 😜😜
The suggestion was appreciated!! May try the flavoured tonics if it persists!!
Hi andy
I’m 8 weeks post and received a split liver. I’ve had infections etc and still fighting one but yes !! I have the most terrible cramps but only in my legs .. tops of thighs etc
I mainly get it at night and in the morning
Prograf can cause this ... hope things settle down for you x
Hmm sent that last one too early. Sorry!!
I’ve been super fortunate so far, no adverse infections or complications. Just a bit of wound soreness - to be expected with how the body has been tampered with!! Hope you’re doing ok.
Andy.
Hi Mel
Can prograf really cause it? I don’t get cramp per se but my thighs really ache - does that count 😁🤔
Miles
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More common side effects
* Abnormal dreams
* agitation
* chills
* confusion
* cough
* diarrhea
* dizziness
* fever
* frequent urination
* general feeling of discomfort or illness
* headache
* itching, skin rash
* joint pain
* loss of appetite
* loss of energy or weakness
* mental depression
* muscle pains, trembling, or twitching
* nausea
* pale skin
* runny nose
* seeing or hearing things that are not there
* seizures
* shivering
* sore throat
* stomach pain
* swelling of the feet or lower legs
* tingling
* trembling and shaking of the hands
* trouble sleeping
* unusual bleeding or bruising
* unusual tiredness or weakness
* vomiting
I think you’ve missed something...,
I still suffer from cramps. Calves at night, when I bed and in my fingers in the mornings. Happens a couple of times a month. Seems to be quite community69 n?
seems to be quite common!
Alcoholic liver disease is a strong predictor of colorectal polyps in liver transplant recipients
Hi all, I had transplant back in feb and doing really well, apart from pain in liver area. I've had a scan and bloods all are clear which isSome really good news and some really bad news.
Endoscopy after transplant 
Odd rash?
