4 months post transplant

[Kamx]

Is been at least 4 months post liver transplant. I would like to know from patients with experience how long it'll take for me to stop getting tired easily and still shaky sometimes? I also have on and off severe headaches and my appetite is the worse.....

[Kristian]

Hi Kamx,

Sounds about right. Feeling tired quickly is something that probably gonna take about 12 months or so, possibly longer, as everyone recovers at different rates. It was roughly about 12 months for me, with the odd occaision afterwards. Its not gonna stop you doing what you want to do, you'll just feel it a bit more. Your body has a lot of recovering to do and thats gonna take a fair bit of its energy to do. You'll also want and be able to do more too, so the two combined is bound to have an effect. Just be patient with it. Remember not only do you have to recover, but any fitness you had will have been lost too, so it'll take a while to get that back too. Do be active, and walking is great for that, but just accept that your gonna need a bit more rest. It does improve and you will get fitter, so just bear with it. There's nothing I cant do now that I could do before. In fact I probably do more, lol.

The shakes are predominantly down to the anti rejection meds, I think its the tac that has the biggest effect on that. As the doses reduce, which they do over time, the shakes pretty much go too. Certainly to a degree you just don't notice unless you are really exerting yourself.

The headaches, they too can be caused by tac in particular. Before transplant I found if I caught a headache early enough 1 or 2 paracetamol right at the start would prevent it worsening. Post transplant paracetamol won't even touch it. Its a 3 - 4 days of headache job, and a nasty one at that. Again the frequency will reduce as the dose reduces, but, for me when I do get them it still takes the 3-4 days to get rid of. I got prescribed codeine to take as needed to supplement the paracetamol. That does help provide some relief at least.

Make sure you raise these things with your consultant when you go to clinic. It helps them and gives them a little prompt to consider if they can reduce your doses. It may not always be possible, but they will look. They may also be able to supplement things with additional treatments that may help too. GPs are not particularly keen to prescribe codeine long term, for obvious reasons, but it may help if it continues to be a problem.

As you continue along your post transplant journey other things may crop up from time to time. Dont worry too much about that, but just be prepared if it does and then raise anything new at your clinic appointment. Still go to your gp initially of course, but just make sure you also raise it with your liver consultant too, otherwise they are unlikely to know directly. In most cases it'll be something they've seen before.

Good luck and hopefully your recover journey will go well. 👍

[Kamx in reply to Kristian]

Thank you so much with all the above infos. Hopefully I am okay down the years to be able to play sports again (basketball) .....🙏🙏🙏

[Kristian in reply to Kamx]

You absolutely should. Get involved with the British Transplant Games, thats a good place to start. Even if you dont have a team they'll make one up for you as they'll be others in a similar position. I'm currently preparing for this years world Transplant Games. I'm doing Athletics and Volleyball, so its certainly possible, indeed its a good target to aim for. Give you that bit of extra motivation to keep active. This years games are in Coventry at the end of July, and there are more sedate activities too if your not quite up to the basketball by then, lol.

[Yellowsydney]

Hi, I'm nearly 6 years post, it generally takes about a year to recover from transplant, your body has been through a major trauma. The shaking is probably caused by your drugs Tacrolimus tremors and will get better as your dosage is lowered. Don't try to rush your recovery, take it easy one day at at a time, rest when you have to.If you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands if people that have been in your situation.

Hilary 💚

[Chasdog in reply to Yellowsydney]

Hi,

Yes I agree re a year for recovery. I’m 2 years post transplant and am still shaky at times. Recently, I started with the type of headaches you described, which were very debilitating. I spoke with my consultant and he diagnosed migraine induced by tac. He has lowered my tac dose and so far, no further problems. He has also prescribed a nasal spray medication to take if I get further episodes but so far, I haven’t had to use it and so can’t comment on its effectiveness. I wish you all the best. Take care. Samantha

[retwos]

The recovery period is 12 months at least but mine was longer and took time to get back to somewhere near how I was , I'd say the shakes are your meds your on and as they reduce you should see a difference, I hope you feel better ASAP

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Kamx,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a pre and post liver transplant group which runs monthly.

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust