Post Liver Transplant: I am worried... - British Liver Trust

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Post Liver Transplant

Kamx profile image
Kamx
10 Replies

I am worried about how my hands, body and voice always shaky and is been 5 weeks after my operation. I get dizzy when I am standing at one place for long.

I would like to know from someone who has been in my position if I honestly will go back to being the same. Like going gym, lifting weight, playing basketball without getting tired in minutes 😥💔

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Kamx profile image
Kamx
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10 Replies
AyrshireK profile image
AyrshireK

It is super early in your post transplant recovery, you are still getting over a massive operation and you're no doubt still on high doses of medication.

Give it time and be patient, you will get there.

Katie

Yellowsydney profile image
Yellowsydney

5 weeks is very new to transplant, the shaking is probably tacrolimus tremors these should get better as your dosage is lowered which it will over time. The dizziness could be caused by a number of things, getting up too quick, blood pressure. Make sure you mention these at your clinic visits. I'm 5 1/2 years post. Hope you feel better soon, don't try to rush your recovery, it generally takes a year to get back to anywhere near 'normal' your whole body has been through one of the toughest operations possible.If you use Facebook please feel free to join out friendly and knowledgeable Facebook group called liver transplant support uk.

Hilary

Kamx profile image
Kamx in reply to Yellowsydney

Thank you for your reply.

I’ve already mentioned this at my clinic visit and usually all they tell you is things will get better with time hence why I had to join this.

And woow 5 1/2 years that’s a long time; would you say you’re back to normal now?

Yellowsydney profile image
Yellowsydney in reply to Kamx

Hi, keep mentioning it at clinic, I never felt ill pre transplant so no I'm not back to 'normal ' but have accepted my new normal. Immediately after my transplant I spent most of the first 5 months in hospital with various infections and issues. Make sure you drink at least 2litres a day to help your kidneys, Tacrolimus is very hard on them.Hilary xx

Kamx profile image
Kamx in reply to Yellowsydney

Same!

I've never been sick pre transplant and I wasn't on a list so everything happened so quick hence why I'm worried. Infection is the worst - I've a big wound in my stomach that I am still recovering from so I'm extra careful with things.

Thank you I'll take drinking seriously.

taar profile image
taar

Hi Kamx

Like yourself, I am post transplant, about 6-7 weeks, and finding it harder to recover than I thought. Strangely, the transplant itself seems to be the "least" of my problems.

When they've asked me to score the pain, it has NEVER been more than 3/10.... But I also feel a bit weak and feeble, including my voice. I also have terrible lower leg cramps, fingers twisting together-- while I watch sometimes! And liver spots developing in both my arms just above my wrists. For the first 4 weeks, it seemed I wasn't getting more than 20 minutes sleep in any 24 hours, but it seems that everything IS getting a little bit better day by day. I have put it all down to the medication and my age (65), and will mention it at clinic on Thursday. My GP has phoned (on Sunday) to say my haemoglobin has dropped, so I am picking up the test results, again to show the liver clinic at QE on Thursday.

Sometimes I think the consultant thinks I am just complaining, but it is more that I just don't know what is important for them to know, and what is just "to be expected." But, as others have said, it really is just early days, and we have to keep getting better day by day.

All the best to you and yours...

Taar

Kamx profile image
Kamx in reply to taar

Thank you and I wish you the best of recovery too x

Jax1971 profile image
Jax1971

9 years post transplant for me, like a few have said just because you’ve got a new liver doesn’t mean you’re instanty fixed. You have meds to get used and you need to work slowly on getting yourself back to full strength or as far as you can do. It took me about 3 months to find some kind of normality and I still have moments where I’m struggling to accept my new normal. Be patient but most of all be gentle with yourself, your whole self has been through this not just your liver so allow and help your whole self to heal. Much love xxc

Herewegoagain12 profile image
Herewegoagain12

Hi Kamax. I am 6 1/2 years post liver transplant. I remember feeling all those things. Your body has been through so much it takes time to recover. I had a few complications so it was about six months before I adjusted to the new liver. I could not write legibly for the first 3 months. So have faith, allow yourself to adjust to your new life It's a tough road, but because I made it I've had the pleasure of watching my first grandchild turn 8 and another is on the way.

Kristian profile image
Kristian

Hi Kamx,

Its ok, its does get better. You won't always be throwing coffee over the kitchen worktop when you make a brew. You'll also get back to writing legibly too, lol. It took me a while to be able to write so I could actually read it. The shakes are just an affect of the relatively high immune suppressant dose you'll still be on. 5 weeks is still early days.

It can take a while to settle down but it does get to a stage where you'll just not notice it. Occaisionally you'll notice it being there, but not to a stage where it affects anything. I find if I've been rushing about I'll notice it again. But its pretty minimal.

You also ask the question about, "going back to the gym, lifting weights, playing basketball etc, without getting tired in minutes". Now we are all different and I can only comment on my experience, but my answer would be yes, absolutely.

Now, it does take a bit off time, not only getting over the surgery but also getting over the effects that the liver disease itself had on the body. So build up gradually. Again, it can be frustrating at times but you will be able to do more and more as your recovery progresses. Just keep up the walking a little bit further each day and give everything time to recover. That first year you will still get tired relatively easily, but its nothing like before and as time goes on it becomes less of an issue. As a gym goer you'll already know fitness takes time to build anyway and getting back to fitness is no different.

For me, I was able to return to work after just over three months, but was very grateful that was on a phased basis. I walked up my first mountain after just over 5 months, but I was knackered, lol. Eventually though I was back to easily walking at the same pace and now quicker than the rest of my walking group.

After transplant I was encouraged to have a go at the transplant games. This I did, and I have just been selected to represent GB in the World Transplant Games which take place in Perth, Australia next year.

I'm a sprinter/jumper, so dont do the long stuff, lol. I've also been selected to play volleyball too. I must admit, I do like to be a little competitive and want to be challenging for honors. However, to do that I need to be breaking pretty much all my personal bests, lol. That does though handily enable me to give you that reassurance about the gym. In about an hour I'm off to do just that and yes, that includes weight training.

My current plan has me on a 5 times a week schedule - 1 volleyball, 2 track sessions and 2 gym sessions. So hopefully that can give you some reassurances as to what can be done in time. I'm 5 years post transplant this year.

Now these things won't necessarilly come easy, and there will be bumps along the road. There certainly has been for me. But, with the right positive attitude and a bit if perseverance it is achievable if you want it.

FYI, basketball is a transplant games sport. So, maybe set a target to perhaps participate in next year's British Transplant Games in the basketball event. It'll be in Coventry at the end of July, so plenty of time still to prepare and no need to rush it. Just take it at your own pace and do what you can. Even if you are not fully fit, you'll still probably be able to enjoy it. There's lots of others things to have a go at too.

Good luck with your recovery, although for a bit longer you may want to stick to mushy peas rather than garden peas. They're much easier to keep on the fork 😆😆.

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