Hi guys, I need to ask this because it's bugging me. Each of you, how long did it take for you to recover from your transplants?. I'm getting mixed answers from consultants and liver nurses (please don't want to hear it depends on the person, it would be great to hear your own experiences). I spoke on the phone with a lady who was my pre transplant nurse. She said "are you back at work yet" I was waiting for a laugh but no she was waiting for an answer. I was like "it's 11 weeks since the transplant" and she replied "but you were doing so well". So is there a time limit or what?
Thanks for listening, hoping to get some answers from you great guys who have been through a lot....
Danny x
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My husband went back to work on reduced hours about 3 months after his tp which was in August 2020. He gradually increased his hours till he was full time about 2 months later. He's been working from home ever since. He still gets tired now even working from home so he doesn't feel he could do the long commute into London again.
Thank you for your kind response. Can I ask other than the fatigue is everything else ok and is he getting on your nerves being around the house all the time...... hahahaha I'm sorry, I have to put a little humour in everything especially since the transplant....🙄😆😉Danny x
Hi again Danny, well there were a few ups and downs - a rejection incident and a couple of infections, which I believe are all quite ‘normal’. Once he started work, all that all went away which was positive and it seemed like a miracle. The only completely unexpected thing, and it has made life quite hard for him, was that he got an incisional hernia. He took up fly fishing about 5 months after his tp, not very physical in the scheme of things and the 2 things may be quite unrelated, but a small hernia has now got quite large, and he needs another op. The size of the hernia now means keyhole surgery’s is not possible so it’s a case of waiting with the rest of the millions waiting for elective supporters.It has affected his mood and mental recovery as well as impacting what he can do, which is a real shame because everything had gone so well in the first few months really.We’re still truly thankful for his donor and without the tp he would not be here now, but the hernia makes him feel very uncomfortable and affects his mobility so has put some aspects of our plans on hold.
I note that you said you have a strenuous job. On the basis of our experience, I would advise some caution and discussions with your medical team in your plans to return to physical work.
Thanks whatdowedo, I won't overdo things I work for myself so I can slowly move forward, plus I have my cousin and work mates who won't let me lift anything. (Brains in my trade will be there, teehee 😃) Sorry for your husband with the hernia what an annoyance. I really do know how he feels... I had one the size of my fist before the transplant and it was repaired during the procedure. Unfortunately it failed and nearly went back to the same size but through a smaller hole (wow it hurt). So I had to go back in on the 23rd of December for a further repair. I had to be cut open again and now have 2 scar's now. Tell him they make you look mean hahahaha 🤣. Well I hope his surgery goes well (I was in and out in the day) and no more trouble. Nice chatting and let us know how he gets on....Danny x
Hi Danny, in all honesty it’s a difficult one, I can give you my version, but you can almost guarantee that each liver transplant recipient will have a different version, with a few similarities.
Whilst still in hospital the transplant coordinator seemed to have more conversations with my family, than me, which on reflection I find strange. But then it was a strange time.
I recall being told that some people can go back to work after 3 months, some take a lot longer for different reasons. I guess it depends on the state your in when you have your transplant, your age, general fitness before tx etc.
As the years have gone on for me and the more I have learnt and been able to converse with the liver consultants, in truth it’s a kind of, how long is a piece of string kind of question, I’m sorry to say.
From my own experience, I found the relief of being alive, the transplant, the crazy drugs, causes a euphoria that only in retrospect I can even begin to get my head round. Being newly post transplant, I found it was like a whole new world, that felt very different, yet it was also just the same (I hope that makes some sense - soz if not lol 😂).
So whilst I know it’s not what you want to hear, it really is about the individual recipient and if they feel well enough to go back to work, and judging if when they do, they are ok as they go through the working day, week, month etc. and taking a rain check if not. Which for me, from my own experience of going back to work, I found that once I was back at work, I found it hard to judge due to the post transplant world I was coming to terms with. Hope this helps 😊
Thanks Bastille and yes it all makes sense I also agree with the strange new world you find yourself in. From doom and gloom (feeling horrendous) to smile's and happiness, coming to terms with feeling alright and no Cirrhosis.You still never mentioned how long it took you to get back to work!!! Teehee 😂.
Maybe 2 days a week and then 3, so on and so on for me but it's coming up to 3 months now and I have a physical job. My brain is telling me that I'm fine as my body is saying calm down Danny 🤣 x Saying that though I'm still dancing around.....🤭😆😉
Phew…..pleased it makes sense, believe me I know you’ve just had your life saved but you really don’t have enough time left to hear out my return to work story……..zzzzzzz…….it even bores me. Just to note it involves crossroads, mountains and rollercoasters and maybe the odd nightmare. 😂
Any hoo……… I’m not someone who wants to offer out random advice, however you stated ‘your body is saying calm down’, I’ll probably go with that instinct. You’ve got a lot of healing to do not just physically, but mentally and emotionally. The ongoing very regular hospital appointments (if that is a thing for you - I don’t know, it was for me), can take their toll sometimes.
Plus work is was it is ‘work’ and can be stressful on the body, you simply need to just check in with yourself regularly, which as I mentioned can be slightly skewed post tx (again depending on our individual experience). Thankfully, I’m still dancing around too, mostly kitchen dancing these days, due to the pando 🙄
Thank you Bastille. Do you know I actually haven't even talked about how I feel. I've talked about what they did and what I'm not happy about and good and bad days. Not actually how it's affected me...........whhhoooow Bessy. I think I'll leave this for my social worker (that is supposed to be there) haha 😇. Yeah back at hospital on Tuesday, my bloods still haven't come down into normal range (slight rejection) everyweek I get told they are fine but they never get any lower. Saying that I feel fantastic and I literally am walking on sunshine (I chuffin nearly died twice and I talk about it like it's nothing) and I am so grateful to be here whoop! 💯😀 X.Next question....😕 Don't panic.... Are you a different person?
Hmmm Danny, that’s a big question and the short answer is mostly no and yes at times it feels like I am different person, who is also still the same 🤣 Theres a lot more I could say on this of course. Having a liver transplant no matter how smoothly it goes (or doesn’t - dependant on experience) is up there as one of life’s miracle moments / traumatic events.
I’ve learned there’s no black and white in this game, or grey for that matter, we thrive and survive in the variety of colours that are thrown in our direction given the day, the situation and the circumstances.
I never had a social worker, wasn’t even something that was offered to me, could of done with one though. I guess, if you need help, aim to keep asking, I found it difficult as there was always so much other stuff going on in my consultant appointments, it was often overwhelming.
Like you I had a little rejection too, in hindsight I guess that it could be a common thing, (not 100% sure though) by the way they didn’t seem overly concerned, whilst I was freaking out beyond belief (mostly tears - don’t judge me 😂).
They know what they’re doing, we’ve never been in this situation before, however the consultants have many times and its something they must keep in check and monitor…..however as the newly transplanted patient and the trauma that I’d been through, the euphoria of it all and the medication all contributed on reflection to how we may feel post transplant.
Morning Bastille, do you want a job? This is the first time talking with you and about this (I suppose you have to be there) uneasy subject. People don't want to hear feeling, my scenario is "well you are better now", I even think like this because I haven't felt this good for years (cirrhosis). All my life everything has been "shut up and walk it off", never "how do you feel"?"how did that make you feel"? You do make an interesting point and I don't think I have dealt with everything yet. Or maybe I have and I should just move forward. Nice to talk with you and keep in touch..... Danny x 😗
Hi Danny, what’s the job exactly?🤣 yes I don’t write much on here for a variety of reasons, I’m more of a reader in the background. Usually by the time I get to read peoples posts, others have responded and I find I don’t have much to chip in. However, I popped on last night, saw you’d only had one reply and I felt I may have something helpful to say so I bravely spoke up. Well its brave for me anyway.
Some people don’t want to hear feelings (however, that is changing, more people have an interest in psychology) it’s clear people really want and need to relate emotionally, freely and authentically with each other. Yet, there is an interpersonal struggle, it is glaringly obvious that people desperately need these kind of conversations, and a space to ‘be ok’ and to ‘not be ok’. (It is possible to be both at the same time).
For many our upbringing and wider society told us all to smile, laugh, make the best of it and get on with it. Which is a helpful message, on the whole.
However, we were born with tear ducts, and I figure they need to be put to good use at times, or we wouldn’t have them. We also are able to feel sadness, hurt, shame, pain, alongside happiness, joy, fear and gratitude, these emotions are ‘all equal’ and the sooner we are able to accept and attend to them within ourselves and others in exactly the same way, the more emotionally healthy we will be as an individuals and as a society.
P.s. there is no way on earth you will have dealt with everything yet, just be, give yourself space, listen to yourself, or maybe you’ve only just starting to listen to yourself, that’s where the truth is, and trust that you will slowly and consciously make the right choices for you, and begin to look after yourself in a way you may have never been able to before. Keep asking the questions. ☀️😊
Hello Bastille...are you a night crawler haha ☺️. I'm a heating engineer by trade but I find myself doing plumbing and heating together and can choose my jobs.
Hi Danny, no not a nightcrawler sadly 🤣 did wonder, why you shared you’re job tbh Danny, then realised I’d put, ‘What’s the job?’ in my message to you, however that was in reference to you jokingly asking me is ‘if I wanted a job’ lol 🤣 I’ve got one, but thanks for the offer 🤣Most things bend my post transplant brain tbh, and post transplant brain is definitely a thing 🤣🤣 I’m sure others would agree.
Anyhoo, I can see you’ve written another reply, will message later, as off out now in the rain ☔️ 🙄 wish me luck.
Hello Bastille, I have read your post again and you are right. I have had to reverse all my feelings even oppress everything because I have only had myself to rely on. My parents have been a massive help with looking after me whilst home (couldn't in hospital, I didn't see family for a week at a time, sometimes) I don't talk about anything to anyone, my dad is my dad always had my mum, he wouldn't be able to use the washing machine or cook a proper meal. (Love them to bits) My mum will do anything with my dad (very, very little on her own). I have friends who are still my mates but you couldn't have chat without going to the pub. If you said "fancy meeting up for a chat and a coffee" you probably would get a laugh or a slap! Teehee! I started to become distant when being poorly and not all know I've had a transplant. I may post things on here but I'm not a Facebook everything person (hard to believe...hey!) I've concentrated on getting to know my family more especially my sister and my niece's and nephews. I didn't see them much whilst my life became work and drink. I suppose I am a person who burry's everything and gets on like treecutter and Geordiemac. I played pool with my brother in-law 5 days after leaving the hospital (testing myself). Now when I finally finished the letter, and feeling confident, speaking to people on here about things I would never speak about in public, (face to face) finally ready to start life where I'm not stuck to the hospital every week....(every 2 weeks now 🙂) moving forward but keep slightly held back (pain, slight rejection, donors family) I'm freeee! (I think) wow I don't know where that lot came from....Love to you all......... Danny x
Hi Danny, is sounds like from your last message you are conflicted between keeping your emotions pushed down (as you say you always have) and / or finding a supportive outlet.
This is completely normal for anyone at anytime, let alone when someone has just been through a live saving and live changing transplant operation.
As you can see above there’s a link to NHS BT Organ transplantation - Support and emotional wellbeing. It suggests key points about how you may feel emotionally, to ask for help and who is available to help in your transplant centre.
Maybe at you next appointment you can show your consultant that webpage, and ask to speak to someone whilst you there that day.
Be honest with them, is hard to do for sure if prioritising you emotions isn’t something we’ve done before and / or doesn’t come easily. You are entitled to access the liver transplant mental health team, it’s part of the process. If it is something you want it naturally, it’s your choice.
Accessing any mental health can be difficult for everyone (due in part to the ridiculous stigma - which is being broken down, thank goodness) but the relief you will feel from sharing your concerns, worries and feelings, will definitely be worth it.
I can remember feeling (and still do tbh) absolutely amazing about having my life saved and the absolute joy and awe of being in a much healthier body. However, all post tx recipients are still very much healing and recovering for many months, maybe even years. Yes, we get on with our lives, and yes our lives ‘may’ be shaped and look and feel somewhat different than they did before.
Be gentle with yourself, as you say you only have you to rely on, but you can do this. Plus you’ve got us ‘health unlocked’ people, the liver unit and you will discover many more along your way. 😊
For me it was all about being patient with myself. Within a couple of weeks of being home I could comfortably walk 1.5 miles, so physically I could've gone back to work 5/6 weeks post transplant. But, I decided to allow myself a lot longer to absorb my new circumstances before even thinking of going back to work. That time enabled me to fully process the whole illness, surgery and recovery.
In the end I didn't go back to work for a year post transplant.
Can I ask if it affected your confidence... going back to work? You see I actually miss my work it can be strenuous but it also can be light work. Thanks for the reply nutrimar! TeeheeDanny x
I have my confidence Buddy but I've not had a proper test yet. I am a heating engineer and when I was doing plant rooms (boiler House's) you had a massive team of people stood around you. It could even be a hospital. That to me at the moment feels too much of a responsibility, (confidence would play a big role) so I think sticking to house maintenance and gradually getting there physically, mentally and confidently is the best way forward. Still have to do my gas Safe, which ran out whilst poorly. That's muscle memory (5th time sitting it) I'm enjoying hearing from everyone and their different recoveries.
And your profile name...nutrima.... hahahaha 😂
Danny x
Hi
I have read your two chats and really understand, I am reaching 4 years now, and am still prone to crying at the slightest thing.
At two years I suddenly realised that I had reached a point where I knew I was about as good as I can get, taking into account I am 10 years older than when I first got Ill.
I also talking to everyone, I did that, but I realised (eventually) I have had an experience that not many have, so there is some interest, but its not that they don't care but there life's are full of being well and work and don't really understand how life changing it all is.
I still have to mention it to people when I meet for the first time, its a sort on need to explain?
But generally don't talk about it when asked how I am I give the standard 'Fine Thanks'
Physically give your self time, you will have to build your strength back up after years of being inactive, you body is going to take as long as it needs, don't push to hard, but do more things as you feel you can. That is what I did.
Fully recover hmmmmmmmmmmmm I am not sure I will every get completely get over what is a life changing event, but I am dam sure I am going to get the most out of life I can
What a fantastic response. I think David that you have summed up everything that I have been thinking. It's like when you shouldn't lift something (not that you can't) but you feel as though you have to explain why. People ask if you are alright (even doctors) you answer "yeah you alright".... hahaha "no actually I'm not" hahahaha 😂. I have used my sense of humour to handle the majority of this, not actually thought about what I've really gone through. I'm trying to get back to my old self but I am actually enjoying my new self (I hope that makes sense)Danny x
Hi Danny, as the others have said we all have different experiences, for me I went into my transplant feeling perfectly well, apart from vomiting up blood I never had any symptoms of liver disease but after transplant had everything, I spent most of the first 5 months in hospital for various infections, kidney problems, bleeding. I didn't drive for 9 months because I didn't feel able to physically or mentally, mainly due to the side effects of the drugs. I don't work so didn't have to think about that but felt useless as my kids had to look after themsekves.Generally I think it's said it takes a year to fully recover from a liver transplant, your scar may heal but if you think of everything that has been cut and stitched internally it is a massive healing process. I'm in contact with hundreds of transplant recipients world wide on Facebook and there are so many different stories.
Don't try to rush anything listen to your body, if you feel tired or in pain stop and rest, talk to your transplant coordinators if you have any concerns.
I don't know what type of work you do but maybe think of doing reduced hours for a while to see how it goes.
My experience for what it's worth I wasnt ill just before the transplant at all ,I'm a tree surgeon so was working right up to it .I was out 5 days later ,felt like id been hit by a bus ,but alive and weak .I was back working 8 weeks later only 5 hours and 3 days a week on mostly light duties cutting hedges etc I was 62 at the time I'm 67 now and back to normal working full time clinics being trees digging g out ponds allsorts so I'm lucky
I really wasn’t feeling well enough to go back to work for a year, but I did have lots of complications and so have been in and out of hospital several times over the last year. That said, I feel amazing now compared to pre transplant and so can’t complain at all. I’m leading the best life ever now 😊 I am also quite a few years older than you so no doubt that will make a difference. As to finally returning to work, this was taken out of my hands as work were less than supportive and so the only option left for me, was ill health retirement! I’m not suggesting that this would be your preferred route!! However, for me, it’s worked out for the best and I think, their loss and my gain 😀 👍Wishing you all the best. Take care. Sam x
Hi Sam, I'm really glad you got everything you wanted and you can even tell in your words that you are cheery. Lot's of coffee morning and sitting in the garden I hope ☺️! I'm having a few little problems, aches and pains. The pain is more than what it should be and I have a decent pain threshold, so still having 2 sets of pain relief. The other is my bloods wont come down to normal and I'm having slight rejection for too long in my book! Anywho I do feel great like what you said pre-transplant awful.Nice chatting
Your love for life and sharing your journey is fantastic.
I think a lot of people maybe feel able to go back to work after 3 months. I personally decided to apply for jobs after 6 months, but due to Covid that slipped by 3 months. By the time (nhs) sorted out all the checks I started working one year on from my Transplant. Part time, but I love my job👍
I have had a blip that took me out for a few weeks, but knowing the job was there made me even more determined!
So I set myself goals, but was flexible
Worked part time, to build up
Have stayed part time to look after my work/life balance and my gift 💝
We are all different and need to do things at our own pace though🙏
Thank you Lam1e, I try but it gets me down also. I felt guilty for a while about the new liver. The transplant nurses made it all good and made me realise that I have a lot to give. That is when I was writing the hardest letter I have ever written. The thank you letter to the donors family it took me weeks (a little at a time) I had to keep stopping. (How do you express joy and grief in one letter.....wow) The liver nurses said it was very good and sent it off for me. So glad you are doing well all the best
Thanks Lamqe and do feel better after speaking with 1 of the liver transplant nurses. I also felt better once I'd joined this forum. I'd already done 3 and a half years knowing I had Cirrhosis until I joined. I needed it to help me through. Very kind of you to share
After 10 days I was good to go and very fortunate to have been ever since. Bloods always pristine from 3rd week after transplant. Consider myself to be very fortunate and lucky, and of course extremely blessed.
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