10 weeks. Since Liver Transplant, had problems sleeping ( insomnia),anyone else experienced this?

[Alyson84]

10 weeks since liver transplant and have sleeping problems ( insomnia),anyone else experienced this?

[AyrshireK]

Congratulations on transplant. Are you still on high dose steroids? They are notorious for keeping you awake at night.

Katie

[Alyson84 in reply to AyrshireK]

Another 2weeks and my steroids should stop so hoping once they are out my system sleeping should improve x

[Hidden]

Good morning,

It can be quite a common problem after transplant. It is possible that it is related to the medication you are on, steroids in particular. Perhaps you could talk to your transplant coordinators and medical team. I am sure you will get helpfiul replies on this forum from members who have been through transplant.

regards

[alfredthegreat]

Hi Alyson,

I am now 18 months post transplant and the only meds that I'm on for my liver is 2 mg of Tac a day.

Some nights I sleep quite well and others I lay awake until maybe 3 or 4 in the morning and then when it's time to get up I want to stay in bed and sleep.

I think in my case it maybe that I'm not so active because I have back problems, but I know of others post transplant that don't get a whole nights sleep.

10 weeks is early days for you though and your body has been through a lot plus your are probably still on a lot of meds.

Hopefully things will improve for you when you are totally recovered and get more active.

Best wishes.

Alf

[Alyson84 in reply to alfredthegreat]

Thankyou Alf

[ThreeSmiles]

Hi Alyson

Yippee for the transplant eh 👍

I am Snap with Alfred the great, in fact we had out TPs only two days apart 😀👍.

For me good sleep can also still be elusive - frequently - even after these 18 months. I also have a back problem like ATG and for some reason - must be metabolism differences - I am on more medications than he is.

Most nights I will get about three hours sleep then be awake for 2-3 hours then asleep for another hour or two. But that’s enough for me really 👍.

But we are all different and as others have said steroids don’t help and they also gave me mega hallucinations- frequently. Do you get those - they can be very un-nerving. Alright at home but not so good on the train coming home tired out from the Liver Clinic 😀.

Hope things improve for you - I’m sure they will. But in general isn’t getting a new liver absolutely fantastic! Hope you find it so.....

Good luck

Miles

[Alyson84 in reply to ThreeSmiles]

Hi ThreeSmiles, your absolutely correct having transplant is the best gift ever, I was so lucky, from assessment to transplant was 20 days, so I shouldn’t really complain about lack of sleep lol. Never had Hallucinations so again another reason to be thankful

[Sqwarks]

Hiya, firstly congratulations on TP, can I be cheeky and ask how long you had to wait? I’m concerned, I’ve just been put on the list,with not a lot of idea how long it will take, my dad is worrying and willing to pay for me to go to India( cheaper) to have it, I’d rather stay and wait,

Sorry about your insomnia,it’s horrible to have, hopefully you will be ok soon, hang in there, good luck Sqwarks

[Alyson84 in reply to Sqwarks]

Hi Sqwarks, probably I am not the best person to ask about waiting time as I was so lucky I only waited 20days

I pray that you get that call ASAP

[TT-2018 in reply to Sqwarks]

Going to India for a liver transplant is not a realistic solution. You need a donor in order to get a transplant.

There is also the question about the care before and after the actual operation and a transplant requires lifelong care.

Well done for getting onto the list and hopefully your wait won’t be too long.

Best of luck with everything.

[Sqwarks in reply to TT-2018]

Yeah, I also have thought all these things, and am supposed to be looking into it! All I do know is they keep you in for 3 weeks, to then go home on a plane?? and assuming you carry on with the aftercare once back,They can’t exactly call me and say there is a liver waiting😳as nice as my dad is, I don’t think he can pay his way out of this one, neither can I talk it.its still a worry but isn’t it all. Thanks for your time, hope you can get some sleep soon, I’m sure you will 🙏

[TT-2018 in reply to Sqwarks]

The reality of transplant is that you cannot buy your way out of the process. You really are best to leave the care in the hands of the NHS, who will give you world class care, to the highest possible level.

In all probability, if you require a transplant, flying would most likely be out of the question anyway.

I am 18 months post transplant and sleeping soundly, no problem with this.

Best wishes,

Mark.

[Sqwarks in reply to TT-2018]

I know it’s my dad panicking, he comes round saying you looked into it yet,cos that’s what I keep saying! He’s panicking I will not receive a tp on time, as I have almost died before.just wondered really how long in general, but, I know you never know,and if you get to the point where your talking days to live and there’s no doner? Sorry by the way about the no sleeping comment, I got the wrong person🤷‍♀️I’m glad you are sleeping thou, 18 mths new liver is brill, take care and carry on with the good work 😁👋

[AyrshireK in reply to Sqwarks]

Hi Sqwarks, the NHS system makes sure that those with the highest level of need are at the top of the list. It is now a nationwide system rather than just the local centres as it used to be.

Livers are matched based on blood type and body size and also what type of liver you have been deemed suitable to receive (i.e. full liver from a brain deceased donor, full liver from a cardiac deceased donor or split liver from a live donor).

The highest placed waiting patient is matched with a donor liver of the correct type, size and blood type as they become available.

Going to India wouldn't be a viable option (in my opinion). If you are so poorly that you need a liver transplant then you are highly unlikely to be fit enough to fly all that way, after care in India and then coming home - will the NHS pick up the bill for your post transplant care if you've had it elsewhere?

Hopefully your wait won't be too long. Which transplant centre are you under? What blood type are you waiting for?

Katie

[Whitelock in reply to Sqwarks]

My husband waited 3 months and it was his 3rd call that he was successful. He’s a new man and hasn’t looked back. Wait do not go India your call will come

[alfredthegreat in reply to Sqwarks]

Hi Sqwarks,

I was 10 weeks on the list.

There is just no telling when your time will be.

It's all down to the considered urgency and getting the right liver for you.

Some people have been only hours or days on the list and others months or longer.

I hope that your call comes soon.

Best wishes.

Alf

[Sqwarks in reply to alfredthegreat]

Morning Alf, yeah I’m hearing ya, just got to wait, and get it out of my mind that I’m gonna die, After Hearing what others have to say I feel better and understanding more,

Thanks and much appreciated!

I’d like to ask you loads of questions but I’ll let you off as it’s Sunday 😆

Going back to bed now, haven’t felt good last few day, almost like ascites and bad head🤷‍♀️ Have a good day!

10 weeks not bad 👍🏼

[alfredthegreat in reply to Sqwarks]

Hi sqarks.

It's a thought that is the majority of peoples minds when we are waiting on the list but it's amazing how the liver can go on even when it's in big trouble.

I had what was termed as termed as stage 4 (liver failure) and a MELD score of 54 even before I went on the list.

Eat healthy and little and often and drink plenty of water to help get rid of toxins. I am sure it was the water that helped to keep me going.

Best wishes to you.

Alf

[ThreeSmiles in reply to alfredthegreat]

Too right - I was told 2 and a half litres a day. Comes naturally after a while - as does going to the loo all night 😀

[Tourguide]

Well done Alyson. For several weeks I had bit of sleep problems which mainly related to tramadol medicine which gave me floating legs. It may be the meds’ your on or without realising it you might not be relaxing. Just tell yourself you and your body are now completely ok and relax. Your body has had a shake up. I was ok after several weeks and now am over 6 years since transplant.

[Alyson84]

Thankyou tour guide