How long did recovery take : Hi guys I... - British Liver Trust

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How long did recovery take

Lunartic
Lunartic
69 Replies

Hi guys

I know we’re all different but wondered how long it had taken those who have had a liver transplant to get back to work.

Going in for my assessment tests tomorrow feeling very anxious - not about the tests but the outcome!

Thanks

Sam

69 Replies
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ThreeSmiles

Hi Sam

Never managed to get back to work proper - 13 months post.

But I do do two half days Volunteering. That way if I have a bad day and need to skip it’s “ok”. Not happened yet though in about 3 months 😁👍.

From what I’ve seen on here though some get back to work really quickly. Think there are many factors that affect that though, obvious ones like age, fitness levels before getting ill, length of time you’ve been ill, etc etc.

Good luck at the Assessment!

Miles

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Lunartic

Thanks Miles x

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ThreeSmiles

Hi again Sam

PS where is your Assessment. How many days - or is the first Assessment? What are you anxious about - getting on the list or not getting on the list?

My Assessments and TP were at QEHB. 👍

Miles

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Lunartic

Going to the Royal Free in London, my sister is coming with me. It’s my first lot of tests for 2 days, then back the following week for one more cos they couldn’t fit me in this week.

Anxious about not getting on the list I guess.

My diet has been crap this week because of it meant to be losing weight not putting it on!!!!! Grrrr

Sam x

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ThreeSmiles

Hi again

Ahh thanks for that! Well that Hospital seems to get lots of 👍👍. Which is 👍.

Ah glad you’re “only” worrying about getting on the list! If you know what I mean.... I think most of us were like that. I deffo was and when they said I needed an extra test afterwards I was umm somewhat sad - to put it mildly. Especially as it delayed me getting on the list by 4 months 👎🏻. But they have to be sure that everything is going to go OK so it’s understandable.

Personally I wouldn’t worry about weight. I was 4 stone heavier when I had my Assessment compared to what I now weigh. I mean just the being ill and lack of mobility doesn’t help does it?!

Good luck tomorrow! 👍

Milesxx

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Snorkers65

I hope it goes well for you.

My Consultant told me that I would be referred to Birmingham but his note to my GP says the Royal Free, maybe catch you there!!

All the best - Dale

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Richard64

Hi Lunartic,

lt's very much horses for courses. There's no set time frame as we are all different.

The cause or need for the transplant may also be a factor as those whose transplant was due to alcohol issues seem to bounce back quicker than those with PBC which may take longer. There could also be post-opp complications.

It should also be recognised that there is the mental aspect of the transplant that needs to be healed and dealt with too. I was doing voluntary work five months after my transplant, but it took me over 10-months to get over the survivors guilt syndrome, and PTSD.

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Kristian

Full recovery for me too about 9 - 12 months. However, there's quite a few steps on the way. Was able to be back in work after about three and a half months on a phased return basis, basically short days. That lasted just under 3 months before back to normal hours. Pain wise gradually eased off, walking was pretty much pain free after about 3 months, ok a little sore at times but I was still getting some pain if I tried to run up till about 6 - 8 months later. It was the jarring effect that did it.

There will tend to be some soreness for quite a while. Quite a lot of it really just as a result of the muscles being cut more than anything else. There also the lasting effect that muscle loss on the latter stages of liver disease has. For me that's what's taking the longest to replace.

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Lunartic
Lunartic
in reply to Kristian

Thanks Kristian

I had read somewhere is was 3 months and told work that!

Still it’ll take as long as it needs to take I guess - hopefully will be given more info this week at my assessment.

Sam x

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Kristian
Kristian
in reply to Lunartic

Yeah, I think the usual recommendation is a minimum of 3 months. I told my work it was a minimum of 3 but could be up to 6 or more. If you work on the idea of 3 I suspect you'll probably be in the right ball park. If all goes reasonably ok and your job isnt too physical you'll probably find this is about right.

It's also worth sorting out the various occupational health arrangements to ensure any reasonable adjustments are in place for you, both pre transplant and also for when you return. Your employer will probably have a company they refer to for that advice and they're usually pretty good.

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ThreeSmiles

I must have been truly unlucky then because at 3 months I was still struggling to hardly even walk properly. And as for the ability to concentrate or even read a pleasurable book let alone figure out stuff at work disappeared due to the after effects of HE and still hasn’t returned. ☹️. I am not alone from what I have heard. And I know you know someone who is still struggling as well, Kristian.........But hey ho I sincerely hope that 3 months is right for lunartic! 👍..

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Oldham12

Hi

You've certainly had a rough ride of it haven't you?!? I think you are an inspiration, you always seem to look on the bright side which is what I try and do!! Take care of yourself Lynne

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ThreeSmiles

I try Lynne 😁. I don’t feel like an inspiration, I often feel I moan too much ☹️. I know I should not complain ever that’s for sure - and when I do say when things are not quite right I still think of the miracle TP I have had and how 🍀 lucky I really am. 👍👍👍

Hope you get some sleep tonight 😁👍 let’s not be exchanging messages at 0300 hehe 😁👍

Milo

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Oldham12

Ha ha. I think I said the other week whenever we meet up with friends or family, try always ask how I am , I say not so bad to which my hubby has now started saying, no she feels terrible, she's had about I hrs sleep or less for the last 5 years!! I know he's right but I just don't want to feel like I'm moaning all the time. Take care Lynne

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ThreeSmiles

Yes I do remember you saying that and particularly the point about not wanting to seem like you’re (or one is!) moaning all the time! Sometimes though you just have to say it as it is so it’s not really moaning is it??!

Miles

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Kristian

I dont think you're the only unlucky one unfortunately 🙁. I know quite a few people where it's been longer. I can though only comment on my own experience. I think I've been really lucky so far and am hoping my luck holds as longs as it can. I am though flinging some across your way too. Hope it helps.

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ThreeSmiles

Hehe I caught them Kristian, thank you! 😁👍. It was a good throw!!

Yes the person we both know has been suffering more than most and for longer than most ☹️ ☹️.

Milo

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ShropshireLass2019

I'm sending our friend suffering in peace and still thinks of others a huge hug from me ! 🤗😁

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Huggy7614

Mornin Looney!!

I’m about 4.5 months post transplant now, an electrician by trade, so rather physical. The worst bit is not putting the stress on the wound, so no heavy lifting etc!!

I’ve been fortunate though. I started dipping my toe back in after 3 months although I did the odd job before that.

I’m now working 3-4 days a week if I can. I still need to be a little careful about what I lift although my capability has improved.

I had pbc Pre transplant and was reasonably fit before - working right up to tp.

Good luck. Try not to worry.

Andy

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ThreeSmiles

Hi Andy

Please be very very careful - my stomach muscles tore apart - recti divarication - starting after about 5 months and now are open vertically to 3 to 4 vertical finger widths - it’s the measurement technique used 😁. It has hurt like umm... a lot 😁 (when painkillers lose their effect) for months (8) now and still does. Review at Brum this Thursday. And I lifted nothing heavier than shopping bags thinking that would be alright but it wasn’t. ☹️

Take care!

Miles

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Huggy7614

Hiya Miles,

Yeah, I do have to be careful, and believe it or not, I am. Fortunately my body tells me if I’m doing too much, and I do listen to it!! Hey, I want to get my medical back and go flying!! I’m not gonna bugger that up!! 😜😜

Cheers mate. Andy.

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ThreeSmiles

Coolio Andy. My body didn’t warn me at all ☹️👎🏻.

I used to fly real planes as well but gave up because of cost and then, probably the real reason 😁, I found out that I was hopeless at flying AND map reading doing cross country lol. Fortunately I could spot EMA runway from miles away 😁😁😁.

Hope you do get back soon 👍

Miles

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Paulwil

I was feeling quite well up to the transplant so I think I was quite lucky.

I was driving after about a month and it was then a gradual improvement.

I went back to work after 6 months but probably could have gone a bit earlier.

Best of luck with the assessment

Paul

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Bookwormfanati

Just reading all your replies and now I am thinking that coming home to a bouncing hyperactive 2 year old (once I get that far) probably isn't the best way to recover maybe??? Terrified of him causing damage oh and of course extra pain!!! Xx

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ThreeSmiles

Where are you now then bookers?

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Bookwormfanati

Waiting to go to the QEH for my assessment which is taking forever!! Xx

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ThreeSmiles

Do you mean waiting for the Assessment date? Yes it does unfortunately- I was at QEHB too 👍. Great experience at the Assessment if you can make it so - meet lots of other nice people in the same boat as you and you’re well looked after!

Good luck.

Miles

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Bookwormfanati

Yes have been referred just waiting for the actual assessment date now! PBC isn't good for someone who is impatient lol Thank you I am not so scared of going for it now though as it sounds like a nice place xx

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ThreeSmiles

Wait wait wait. Unfortunately I find I spent, and still do spend, a lot of time waiting. I was referred in May for a Dermatology appointment. I got the appointment letter last week and the appointment is end of November. Hmmm 6 months 👎🏻.

Hope your Assessment date is sooner than that, I’m pretty sure it will be a lot sooner - QEHB is very good. The only odd thing to me about QEHB is that you even when you know the doctor has said to come in for something but the letter takes three weeks to work its way throught the System. 👎🏻.

I assume the one you’re waiting for is the introductory one day one? Then there’s a gap of a few weeks until the extensive Assessment which is two days. But I guess you know all that!

Good luck with the Assessment 👍

Miles

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Bookwormfanati

Yes it is but I was originally told that as I had to travel 100 miles I could be there Monday to Friday to have it all done together??? Is that a thing?? Can't be travelling a 200 mile round trip every other week how boring!!!! 🙈😂 Hope your well Hun xx

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ThreeSmiles

Hi

It wouldn’t be every other week because there is one one day session and another two day session where most people stay overnight so only two sessions with- for a total and of three days that’s it - yippee 👍.

But if that’s what they’ve offered you then it should only be one three day session. Otherwise it is, strangely, a five day session as an inpatient! I’m sure you don’t want that 😁. And you must be very lucky to get it done in one stint because we had a two hour journey each way - if there were no crashes - and others came from Wales, i.e. even further away.

Yes I am thank you 😁👍

Miles

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Bookwormfanati

Got to do public transport though its going to take forever!! 😂 Thank you so much for your replies they really help me 💝 xx

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Huggy7614

Hiya bookworm,

Was also 100 miles away. Did the first day as a day trip and the second two day assessment we stayed in a local premier inn. They can provide accommodation on site which is basic but ok.

When I was on the ward post tp there was a guy there mon to fri for assessment, but that looked more of a pain. He also had more complicated health issues.

Speak to the transplant co-ordinators, they know what’s available and what can be done. They’re extremely helpful.

Good luck. Andy

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Huggy7614
Huggy7614
in reply to Huggy7614

Oh, and best don’t try to pick up your young un just after the tp - it just wont happen!!! 🤨

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Bookwormfanati

😁 Hes not going to be impressed! 😂 We have to do public transport as my other half is a bit um .... to pass even the theory test!! 5th try next week!!! Will that make any difference?? Xx

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Huggy7614

Hmmm bit of a hike to have to cycle there!! Mind you you’d get past the traffic on the m5!!!

The start time is slightly later for first assessment and day 1 of second one to allow travel. But day 2 of second is earlier as they presume you’re close by. Again, it would be worth speaking to the co-ordinaries, see if they can help or advise.

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ThreeSmiles

That’s well remembered huggy - I had forgotten that! Well there’s a surprise - me forget - hmmmm

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Bookwormfanati

Did anyone stay in Birmingham with you when you went in for your procedure?? If so did they use the accommodation?? Xx

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Huggy7614

My other half came with me. We got the call at ten pm, got to Birmingham for 1am, and I went into theatre at 9!! She then wandered around aimlessly for a while before booking into a premier inn. She went into next, bought two trays and then had no recollection of doing so when she looked in the boot of the car the following day!! She had to check receipts to make sure she hadn’t nicked them!!! 😝😝 I came out of theatre to icu at 4.30 but then stayed fast asleep.

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Bookwormfanati

Oh bless her! I keep saying to my partner that once I eventually go down to theatre it's alright for me for a couple of days! He's the one wandering around like a lost sheep lol xx

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Bookwormfanati

Was that your first call or had you had previous trips up?? Xx

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Huggy7614

Ha now that is so true!! They’re the ones that do the fretting!! We just lie there, lap up all

The attention and push the button for a bit more morphine!! 😝😝

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Bookwormfanati

I am allergic to Morphine 🙈 So hoping that they can come up with some magic medicine I can take!! Xx

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Huggy7614

Noooooo!!

Actually I only had morphine for 3 days then on to paracetamol. Bloke opposite me was on tramadol - but then couldn’t give it up!!!

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Huggy7614

There is a room available for partners. Same as they use for the assessment days I believe.

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ThreeSmiles

We were at QEHB too 👍. My wife wasn’t offered a room but she had a bed made up in the pre-op room with me overnight. Then heaven only knows what she did all afternoon and the next night till they brought me round the next morning. Just moped about I believe ☹️.

For the two day Assessment we stayed in Heritage House which is the Hospital accommodation. Still had to pay ☹️. And to say it was basic is, well, it is! A kettle but only one cup! Like a student room I guess - well a very old fashion one - not as good even as my room at college 45 years ago! They do however have two empty TV lounges with great TVs 😁😁👍.

Ah well 😁 it all served the purpose 👍

Miles

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Huggy7614

Yeah that’s pretty much how I hear it was!! I had a nice comfy bed so I was alright!! 🤪🤪

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ThreeSmiles

Trouble is you don’t remember that do you buggy - now come on be honest. Especially with all that morphine you kept stuffing in 😀

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Huggy7614

I’ve never been called buggy before!! 😝😝 hey the morphine was way better than the food - although I recall thinking the food was good when I was in icu and ate loads!! Must have still had HE then!!

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ThreeSmiles

Omg sorry on my way to the Hospital where I drive a patient buggy! Must have warped my brain 😀Or was that the HE? Or both 😀

Bit like you and the food. It was OK except for the toast - sorry I mean cardboard, when it got to our ward!

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ThreeSmiles

Don’t think so bookie ☹️ Unfortunately!

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1football

Hi Sam

I was back after 4 months but found it tiring for another month,I can do more or less what I did before but can no longer use ladders as I get dizzy quite a lot and my hands still tremor my consultant tells me it’s the medication and as am now 17months post TX it’s about as good as it’s going to get but to be honest it doesn’t really bother me and life is amazing I also worked up to day before transplant I had HCC due to hep c.

Best of luck

Huw

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ThreeSmiles

Great job Huw 👍. Phew - ladders - no way jose - But hope it doesn’t affect your work too much not to be able to do that any more!

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Jaycee19
Jaycee19
in reply to 1football

You are doing amazing ! Jaycee

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AndyEssex

Hello

I've just started back to work after 2 years. My transplant was quite a complicated one in August 2017 and I also underwent 2 incisional hernia repairs at the end of March 2019. I think I've been recovering more from the double hernia operation than the transplant itself this year.

I decided to go back to work because it felt like the right time. I wasn't going to get any better indoors. I knew it would be tough but I needed the structure that work provides. I do feel slightly more lethargic than I used to but in general I've always been a very lively person, so maybe the fatigue doesn't affect me quite so much in the way that it affects others.

Being financially independent again is so important to me. Getting back to work has worked wonders for me psychologically.

There were many times when I thought I would never be able to work again.

I feel that you need to be physically and mentally ready to work, and you need to be used to the side effects of immune suppressants (if any).

Andy

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Bookwormfanati

Are the hernias anything to do with the transplant?? Really good to hear you have managed to get back to some sort of normality!! Good Luck with everything xx

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AndyEssex

Hi there, and thank you. Yes the hernias were a result of the original operation. It's reasonably common for this to happen. Sometimes the medication can increase the healing time, therefore allowing the intestines to break through the cut in the abdominal wall. I'd say that the hernias have caused me as many issues as the transplant. My right side is completely mesh now and it feels strange all the time. I have got used to it a little bit.

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jojokarak

Hiya 😊 I am nearly 3 years post and I couldn't go back to work even though I would love it but I have had numerous problems and I also have kidney disease through the immunosuppresents

It's took a while to accept I wouldn't be working again but hey ho I am alive 😊 I keep myself busy with little projects at home and I enjoy being able to meet my friends and I love my life now...

But I had a long and difficult illness beforehand so I think it depends on that as well and also post recovery I wish you all the best ❤️😘

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ThreeSmiles

Hi jojo

Interesting that your kidney disease is being attributed to the immunosuppressants, mine is being attributed to my blood pressure tablets (Amlodipine - changed now to Ramipril). Not helped by Diabetes T2 as well apparently.

Miles

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jojokarak

These little pills as amazing as they are cause a shit load of problems x

They talking about putting me on sirilimous it's usually what kidney transplant patients are given but my kidney doctor said they cause there own host of problems lol 😂

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ThreeSmiles

Crikey oh riley jojo - you go from from one nasty thing to another ☹️. At least you seem like you are putting on a brave face through it all - while it just seems to go on and on for you 👎🏻☹️.

Miles

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jojokarak

I not worried last bloods everything was stable that's the main thing x

Just hope the ones I had last week are the same 😂 😂 😂

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ThreeSmiles

🤞

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Jaycee19
Jaycee19
in reply to jojokarak

Everything here crossed for you Jo Jo xx Jaycee

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Jaycee19
Jaycee19
in reply to jojokarak

Still thinking of you Jo Jo xx

Jaycee

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Liverlover

Hi, I went back to my desk job after 4 months. Good luck. The royal free team are amazing.

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Lunartic
Lunartic
in reply to Liverlover

Had my first day of assessments yesterday and the staff there are all lovely

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AndyEssex

Professor Pollock was amazing throughout and I now see Dr Kallis on a Friday afternoon and he is also great.

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Jaycee19
Jaycee19
in reply to Liverlover

I totally agree with you regarding the RF. Jaycee

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