Hi, I'm Oldred, 'cos I am an old Man Utd fan. I had a liver transplant in December 2018 and slowly recovering. Everything is going well, though I am suffering quite a lot of discomfort. I am told this is normal but I had hoped to have been better than this nearly 6 months down the line. What experiences does anyone out there have? I do feel incredibly grateful to the donors family and all the medics as I am now cancer free and being monitored brilliantly.
I'm new, hello: Hi, I'm Oldred, 'cos I... - British Liver Trust
Hi Oldred. We all differ in recovery times. I,like you, am now cancer free (8 months post transplant). I had a difficult time after transplant as my op wound didn't heal properly until week 13. All is fine now though as far as transplant is concerned. I still get a few twinges round the op scar but I got worse with an appendectomy scar years ago. The thing is not to do too much too soon and don't try to push yourself. I still get very tired but nothing like as tired as pre transplant. Like your name Wife's family are Man U fans. Wife was born Warwick Road south ( true Stretford Ender!) All the best. Alf
Hi oldred 😊 a fellow united fan here and a manc 😁
As alf mentioned its different for us all I don't have any pains as such but I am 2 and a half years post and I am no where near like I was before I got ill but I am alive and living and thankful, we all just seem to adapt to our circumstances as time goes on just remember there is no rush x
Feeling on top of the world and then a month later in with rejection... But physically weak no muscles back, very thin and tired it is all perfectly normal... I have got my muscles back but I still have fatigue but I have had a lot of complications which aren't the norm.... I would definitely give it another six months 😁
Where do you live? And which hospital did you have your transplant?
I’m nearly 2 years now. The initial recovery was fine but then I spent quite a long time nearly better but still with aches and pains in my hands and shoulders due to the Advagraf I’m on. Also I was suffering badly from HE at the time of the transplant and I have a few small problems with brain damage.
Now, nearly 2 years down the line my pain is much better. Infact I remembered the other day how painful it had been before. I’d forgotten. Also I suppose I’m now used to the other probs and they don’t get me down like before.
Time is a great healer. I work part time, on my feet all day and that’s fine for me. One day working, on relaxing etc. I haven’t been ill with colds or sickness at all even when my kids and hubby have been terrible.
We’ve been given a wonderful gift and we must try our best to do it justice.
You know Isabelle I haven’t had a cold or anything since TP either, which is very unusual for me - very 😁 - I thought we were meant to be more susceptible because of the immunos. I’m sure some clever person can tell us why 😁
Hi there.youve been very lucky then cause I feel great three months post TP and going back to work hopefully four weeks time but picked up a dreadful cold and had it for about eight weeks also Ive had three courses of antibiotics for an infection from a catheter I had in up to a month after TP and yet the antibiotics haven’t touched the infection so I’m due to go back to hospital to see a consultant as they think it’s causing my kidneys problems yet liver wise I’m told everything is fine.but I’m so worried about this infection because if antibiotics aren’t getting rid of it I’ve no idea how the doctors will.paul
Oh dear Paul. I was only recounting my personal experience and not getting colds or any other illness (excluding pains I mean because my abdominal problem just goes on and on ☹️) is very unusual for me. If you are getting colds, as I understand, alfred is also, then it must not be anything to do with the immunos but just very good luck for me.
I am sorry about your problems and I do hope that the Hospital can sort something out for you. Please let us know.
Your body is going through huge healing still. It's one of the, if not 'the biggest' op that we can have. You were just unlucky to get a cold whilst you were at a low ebb. Hopefully your infection will clear up very soon. My op wound didn't heal for 13 weeks and very luckily didn't get infected but I think it was on the cusp of it. It was very smelly a couple of times when the dressing was changed. We all differ in the healing process. Some younger members on the forum have healed like magic! All the best and speedy healing . Alf
I just felt I had to wish all you transplantees (& man U fans ) the very best in your recoveries and coping so bravely with all the niggles it brings along the way.
Love to you all
How long things take to recover differs a lot from person to person. I had a pretty uneventful recovery post transplant but even then I was still having a bit of pain after 6 months. It was probably 9 - 12 months after that it had all settled down. Even at 6 months any jolt would still be met with a bit of a "oooo arrghhh, that smarts" sort of reaction.
I thought I felt better at 5 months, but now at 14 months I realise how much better I could feel.
Th main thing left is terrible aches and pains, by the afternoon standing up and walking is really bad till I can get going again.
But hell its a small price to pay!
I am sue things will continue to improve for you its still very early
Like a lot of others i still have a few issuettes 8 months down the line. As others say about being careful what you do - whatever you do do not hoover until pains subside (I have paid the penalty by hoovering too early - ahem - 😁. Joke btw 😁). Not the penalty ( I have split my abdominal muscles ) - but the hoovering - before I get abuse (abuse? On this forum - never 😁)
Speaking of penalties and fusbal, we all have our little crosses to bear - but we’ll let you off 😁😁
Hi Remainer. I was only on the waiting list for 13 months. I was very lucky. I had 4 abortive trips to the hospital when the livers they had were not viable, but even that's quite good. Medics are very happy with my progress, though I'm not so happy with the discomfort that I am experiencing right now (5 months). I'm told it can take a year to feel back to normal. Roll on.
Yes, we were told could be 12 months or more. Then again you have no real way of knowing, so have to be prepared. 4 abortive trips for you before transplant sounds stressful, Glad to hear though you are now transplanted and I'm sure each day you will gain more strength. It's a huge surgery to go through. Best wishes, Christine.
Hi Oldred, I was just listed a couple of weeks ago. I live in Somerset so like you I'm going to King's, did you go via Derriford?
At our education session at KCH the TP coordinator said some people go back to work after 3 months, and most people are OK after 6 months. At the time I was a bit shocked as many people on this forum, even those without complications seem to say more like 6-12 months?? I'm sure there are exceptions, but 3 months sounded way too soon to me!!
4 calls before the one sounds super stressful, just the journey itself is tiring enough. Did you get taken and brought back each time without complications. I was told they have an arrangement with South West ambulance service, but sometimes they have to use taxis. I had an image of long waits for transport to be organised if you have to be brought home. That journey must have been hard for each time?
Anyway, I'm very happy for you that you've had your TP, and I wish you continued good recovery. Defo don't overdo it. As my very Somerset dad would say," just draw on quiet! “. Which translated means take it easy.
hi Wass. Nice to hear from you. I'm lucky(?) I had just retired a few months before my transplant so going to work isn't an issue for me. However, after 5 months I don't think I could go back to work yet, and I had quite a sedentary job, though quite a bit of travelling. As for trips between home and Kings, they try to use an emergency ambulance so that they can blue light you there. I did go by taxi once. If you have an abortive trip, you have to find your own way back! That can be a real pain in the backside as Kings isn't in central London, you could be sent home at any time of day or night, there is no public transport late at night/early hours and trains are very expensive if you travel at short notice. Sorry to point out these things but it's better to be prepared. Don't get into too much of a sweat yet, I had to wait 13 months and that was considered to be quite quick. I was told that, unless you're urgent it could be up to 3 years and 5 trips is less than average. Keep your chin up, get in touch if you want to. Good luck 😉
Thanks for that, I'm interested to hear about that trips home thing, because I asked that question at the education session and was told they would take you back. However I had heard from someone else it wasn't the case, that's why I asked what had happened to you. Good to know, because it would be better for my husband to drive then we wouldn't be stuck. Then you have parking to worry about!!
I'm glad you don't have to worry about work, hopefully you'll continue to feel better every day.
I'll defo contact you if I think of anything else, thanks again x
My husband just had a transplant at Kings 10 days ago (listed sometime in March). We are in Bristol and they sent an ambulance. They want to make sure that you get there quickly and a blue light makes all the difference. It arrived at the house less than an hour after we got the phone call, so be ready for a very stressful exit! We were at the hospital in under 2 hours. Although we had to wait 24 hours in the hospital (36 hours without any sleep for me, as only 1 bed and a very hard chair!), the doner organ was good, so he was lucky first time. The Op was over in 5 and a half hours and so far, apart from him being allergic to the painkillers, all seems to have gone very well. He was sent home after 8 days (which seemed very soon, but the man was chomping at the bit as he hates hospitals and had been moved to a shared non-transplant ward the day before which was very stressful and not at all relaxing).
My biggest problem is stopping him from doing too much! You try reasoning with someone on steroids ....aaargh!
Kings will arrange transport to bring you home in a car - as for a long wait, we had the opposite and he had his stuff chucked in bags and was rushed out with barely any notice (Kings are great for medical care, but seemed lacking in emotional care at times). Top tip, if you have someone going with you, the Listen Lodge was an absolute life saver for me in a very stressful and exhausting time. A wonderful charity flat with rooms for transplant patients family just round the corner. London is quite a scary place when you are not used to it, and having somewhere to stay so close and comfortable, made it a lot more bearable. I also had to come back and check the kids were OK for a couple of days too, but kept the room.
You also get transport for weekly checkups as public transport is a definite no no.
I just wanted to give you a positive story regarding first time luck and also our experience coming from the south west.
Fingers crossed that all goes well for you. xxx
Hi, glad all went well for you. My home trip was a nightmare but that's in the past now. I'm 7 months post transplant. DON'T LET HIM DO TOO MUCH. I tried and it knackered me! The op has been very successful and the medics are pleased. My only issue is that I am still very uncomfortable on my abdomen. This, apparently, is the nerves and muscles repairing and could be a year or more. Still, it's better than the alternative!