Headaches & tremors

I had a liver transplant three an a half weeks ago after 9 days they sent me home, which as I look back over this past month is quite frightening but I put my trust in the skills that not only do St James teach but also practice, I'm on various tablets but my issue is I seem to tremble a lot and twitch with no control and lastly I get these headaches in the morning.

Has anybody else had the same

23 Replies

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  • hi there,I came home 2wks ago from leeds,and im in exactly the same position as urself,but it was the best thing in the world that could ov happened 2 me,i was in for 12days and could not waiit to get home,my tablets are up and down one week 2 the next,and i shake like a shitting dog,but they will sort it out of that im sure,do u still go 2 clinic on tuesday coz i must know you,its paul

  • What bed were you in paul? I had my transplant on the 4th and I've been home now for 15 days I was in bed 23 nursed by eve (the black girl)or Jeremy and yes I go on a Tuesday 10.10 am and last wk 10.40

  • Hi guys. I had my transplant at Kings in January. Did you not have a post transplant chat with a coordinator? I am sure that you are having side effects from the immuno suppresants. I haven't had the headaches, but I do have the tremors. However they aren't too bad, just enough not to trust getting a fork full of peas from the plate into my mouth! All the best.

  • Ha ha yes that bloody fork full of peas, that's me all over. As for the headaches etc I've had none today thankfully... But that peas comment made me laugh

  • i was in bed 27 fella,mine was done on the 24thov last month,10am last week and 11am this tuesday,i expected to have side effects from the drugs and if i had to have these symptons for the rest ov my life that would be ok,as in myself i feel fantastic, iv spoken wiv other people and they say it just takes a littlee bit ov time for things to sort themseves out,stay positive thats the main thing,would b gratefull for any other transplantees coments please.

  • Oh I'm positive paul like you wouldn't believe and yes I'm sure time will sort it and the medication being tweaked will help.

    I can't believe I don't know you I'm sure I will recognise you when the time comes maybe Tuesday

  • lots ov people say i look a bit like lee evens,il there 2moz for 11am will b sat with a very pretty blonde,well have a natter then bud.

  • Delighted you are making progress despite a few issues. I had my transplant 18 months ago and the first few weeks at home were a little problematic but you soon forget as you start to feel better. I am now fitter than for a very long time and apart from having the need to be a bit obsessive about medications and the few things to avoid eating, life is back to normal for me. I hope you achieve this too.

    I too was in Leeds and I found all aspects of care, including after care, very good. It would be worth spelling out your symptoms when you go next Tuesday and they may make some adjustments to medications.

    All the best

    Mike

  • Cheers mike it's good to know im not the only one obsessed with their tablets, and that 18 months later your doing well. very very good to hear

  • hi mike,thanks for ur imput,im realy realy interested in finding out how people r doing further down the line,how long b4 you went back to work,have your meds evened themselves,how is your weight because im struggling to put some weight on,im a plasterer and need some muscle mass back and am worried i wont b able to get match fit again thanks again for your coments paul.

  • Hi Paul. I was lucky in the despite having a tumour, I was never ill before my transplant and that made things better post op. I was home after 11 days and meds etc took a while to settle but as time passed, things drop off the list and doses reduce. I work freelance and it involves talking to people, doing presentations etc and I tried it about 4 weeks after I got home. I found it very tiring and waited another 2 weeks before having another go. Things were more or less back to normal after about 3 months, but as I have said, it is not physical work. I did start going to the gym, mainly treadmill at first and then some weights, and now go regularly.

    My weight has stayed steady since I got home. At first I was on those diet supplements (yoghurty drink from the hospital) and as my weight stabilised at a normal level, I stopped those apart from an occasion last year when some med changes caused diarrhoea and I lost about 1/2 stone. This has just happened again so I know it doesn't take much to drop weight. Other than that, I try to eat healthily.

    I understand your impatience to get better soon and I am sure if you let Leeds know what is going on for you and you follow their advice, things will settle.

    Best of luck.

    Mike

  • thanks mike,i suppose im trying to run to fast at the moment,iv got to find a gym,struggling a little wiv tremors etc but am sure they will sort themselves out,take care paul

  • Been following your posts.. Thank you for this wonderful insight. My husband is soon to be listed... So reading these has been really reassuring as well as what to expect... Thank you again

  • Hello Paulivicky

    I too had a liver transplant at St James. I had mine in February and I was the same as yourself, I had prepared myself for the transplant but I hadn't prepared myself for the recovery and became very impatient. The doctors & my family had to constantly remind me what I had just gone through. I was very ill before my transplant and also suffered with rare complications after the transplant.

    I also suffered with headaches & tremours but was told that these were because my body hadn't got used to the meds I was taking & that my body just needed time. I now don't have any of those symptoms. I still get very tired but that will pass. Excerise is very important, I've only just really understood that & have now joined a gym, I don't go mad as I have a disability with my back but I go 3 x a week for about an hour at a time and I feel the benifit of it. Weight wise I've gone down 2 dress sizes but before the transplant I was carrying a lot of water retention. I wish you all the best for the future and if your unsure of anything ask the doctors they really do help to answer your questions and put you at ease.

    I'm now going to the outpatients in Lincoln wing as you only get 3months of outpatients appointments in the Bexley wing, who knows I might see you one day there.

    Stay well.

    Anne-Marie

  • thankyou ann marie,begining to think these tremors wil never go,every week they either put meds up or down,ive always been a very active person being a plasterer and find it so hard to just sit back an let other people do things for me,an some days dont want to go out at all,but it was just over 5wks ago so i dnt suppose ive given it to long have i,but wil hve 2 join a gym in a few weeks,all the very best paul

  • Hi Paul,

    My first transplants were over twenty odd years ago and like yourself i'm in the building trade and (i'm guessing your self-employed) so like me needed to get back to work as soon as possible. DON'T rush things (take it from me, please). As others have said it will take time for your body to get back to 'normal', the meds will be reduced over the next months/years or so as you get a 'level' your body is happy at. The thing i found the hardest was some times it felt as if my body had run a marathon and i couldn't understand why, but over time it does get a lot easier and your muscle mass will return. The gym sounds a great way to start (wish i did that), just don't set your heights to high to quick.

    Buddy.

  • thanks fella an yes i am self employed,my mind seems to want to do more than my body at moment,but need those muscles puttin on,have u got rid ov tremors,u take care fella

  • From your posts you are just at the start of your recovery, so you will be on i guess, high doses of steroids (and again guessing) this is given you the tremors. Well worth talking to your support team about this at your next visit. Myself the steroids had different affects and the tremors soon past and wasn't too much of a problem. I know this sounds like a long time at the moment but after a few months you will find a level were the shakes/headaches are a thing of the past. After all, the steroids are a bit of a sledgehammer to crack a nut really.

    All the best mate and take it easy.

  • I think we should get 12 months free gym membership as part of your recovery programme, as I'm sure lots of people are put off by the costs of joining £700 for the year near me!!!

    Like you paul my meds have been changed AGAIN! But on a plus note my tremors are getting less and less but these bloody headaches are a nightmare then the loss of appetite its unreal............... Still better than what was on offer

  • hi card,thanks for your imput,we should all get gym membership,funny you should say about appetite but im finding it fading away,and some days could quite easily give it a miss altogether as with drinking fluids were as before transplant never stopped doing both but hey ho still feeling brillant take care fella,paul

  • Yep I'm with you on that, besides back ache caused by muscle wastage I've not felt this well for a long time, its amazing what we take for granted. You there Tuesday?

  • 10.30 fella,we do take it for granted,i worked until xmass when i got neumonia,prior to that thought it wos the norm to feel like shit,but now know different,see you tues paul

  • Hi chap, just like to tell u about my experience. I found out I had hep c app 4 yrs ago and was suffering jaundice,water retention as in swollen belly,ankles,face etc i then under went a yrs treatment in April 2012 to clear the hep and its a hell of a treatment similar to chemo. To cut a long story short I cleared the hep in 7 months which was last october but continued to have side effects long after, i continued also to suffer cramps,itching etc. In December they confirmed the hep had caused cirrhosis and in feb an MRI showed 2 cancerous tumours although I was on the transplant list I now went urgent and had a transplant in April this year. I was in 6 days and allowed home,mine was done in Birmingham which has specialist liver teams. I was fine at first until they called and said increase your Prograff anti rejection drugs from 8 a day to 10. i to then had headaches and dehydration and was readmitted for 4 days to hydrate etc, they are so strong them Prograff that they have to be so careful. I'm only 4 months post transplant but I'm now only on 4 Prograff a day,1 aspirin and 1 penicillin. I was on 36 pills a day when first at home. It's the steroids that put weight on for you I was soon up to 16 st when normally 14 st. I returned to work on reduced hrs after 3 months I'm a warehouse manager and I'm nearly back full time. I was also driving again after 3 months and use a rowing machine 30 mins a day at home. My hospital appointments are now monthly as I've moved back to the medical team from the surgeons. My blood tests are fully normal in everything now ,my haemoglobin is 13.0 when it was 8.0 at one stage. Itching,cramps jaundice yellow eyes have all gone. I'm 44 and I received an 18 yr olds liver which the surgeon tells me took straight away.

    Now I can move on and have a life to live.

    Hope this helps you or anyone else on here, it is tough at first and at one point you can't see yourself ever getting there but the main hardest point is the first 3 months but after that it gets easier and more promising.

    Remember your families have also had a very worrying time with you.

    All the best

    Danny

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