I’m just back home after going into hospital for a few tests but ended up going through my 2nd transplant assessment. Luckily I passed and I’m now on the list for a second time. Has anyone in here had to have a second transplant?
Their is a problem with my bile ducts and the bile ducts in the transplanted liver. There is nothing that can be done to repair this so I have to have a second op.
Bit shaken up to be frank as I don’t fancy having a second op and having to go through the operation and the recovery again. Well that’s if it all goes well. If not then theirs not much I can really do is there.
Anyways does anyone have any experience of this ??
Cheers in advance.
Will
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Willh0
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Hi Freddie, initially they thought it was a problem with the bile duct connection and they may have been able to put some form of a stent or bypass in, but alas there is also a problem with the ducting inside the liver so unfortunately a transplant is the only viable option.
Hi Will, I don’t have experience of this but feel your anxiety, must be real scary for you but you passed assessment so at least you are fit enough for a second op, take care 🌸
Thanks Kate. I was lucky to manage to get the transplant first time round when so many people don’t. I hope that it will happen again and I’ll be better prepared this time round, well if it happens since everything is time and situation dependant. But fingers crossed.
Well ive never ever had one transplant. But I'd just like to send you a little
GOOD LUCK MESSAGE.
Wishing you all the best and fingers crossed 🤞 everything is going to be okay. I know you're gonna be worried, no matter what people say. But I thought I'd just like to tell you that the electrician that have not long finished doing some work in our house has to go in for his 2nd transplant by the looks of it.
You take Care of yourself and stay strong. Youve passed your Assessment, so the sooner its done the better.
Thanks my friend. It’s just a bit of a shock at the moment and the thought of having to go through it all again but the question is, what else are you going to do? The only thing is to leave it to the experts, get my body in shape and just wait. Their are a large amount of people that don’t make it this far so I am very lucky it has happened the first time and caught very early this time too. Onwards and upwards.
Sorry to hear about your news but it’s good to see your positive attitude. As you point out, this time you will know what to expect. You are in the best possible hands.
I hope that your wait is not too long and wishing you well, going forward.
I’m sorry for the news. I’ve had one so I understand you aren’t keen to go through it again. I think there are people on here who have had second transplants.
Hi Isabelle, just don’t want people to think that I’m greedy😉😉.
Bit of a shock but not much that I can do apart from exercise, eat and wait again. Repacked my bag just in case, that said I’ve a feeling it might get a wee bit dusty!!
Sorry to hear this. When was your transplant ? My partner had his in 2016 & has just started to have bile duct problems. Had a stent put in 3 weeks ago but not doing great.
Hiya, mine was only done at the turn of the year so just under 11 months. It was all going ok and I felt and feel ok still that’s the bit that surprised me.
My LFTs started going a bit off about 2 months ago so they just kept an eye on it. Then when I went back into the standard monthly tests it was abnormal again so brought me back in for tests and so on. They weren’t exactly top of the pops so had me stay in over the weekend and started me on another weeks assessment.
Found out on Friday and that’s be back on the list. Bit of a shock as up until now everything has been more or less OK.
Hi Will. Have they said how long you are likely to be waiting? I see from your previous posts that you come under Edinburgh. I was transplanted there in May. When did they first notice there was an issue with bile ducts?
Oh I forgot to say that we don’t know. It’s just back on the transplant list. Last time it was 11 months so it could be next week or next year. All just depends on when the next viable liver becomes available.
My LFTs were a bit off at the end of sept but that could have just been a blip. It got retested at the end of Oct and I went back in a few days later. They were still abnormal so I had a CT and MRI done. A biopsy going in through my neck which I’m sure you can guess tickled!!!!!
So after all this. There is a problem with my bile duct that is in such a position that they can’t put a stent into, they have then also found that there is a problem in the ducts of the transplant liver too that they didn’t know about so there is only the 1 option that’s left open.
It’s just a kick in the you know what’s as I feel fine and was finally putting weight back on and looking forward to next year. It’s just set me back a bit but unlike a lot of others I’m still here and able to have it done when others haven’t been quite so lucky.
Hey will I think I was probably in Edinburgh at the same time as you 🤔 similar story routine clinic visit and bloods were off only difference I still don’t know what has caused it got an ultrasound and a biopsy loads of blood tests to go back on the 26th, I’ll hopefully find out more then, I do consider myself lucky this is the 1st time in 4 yrs I have had a problem but it is scary , take care 🌸
I am very sorry to hear this, l know you were thinking it was finally over and done. I really hope you're doing okay mentally, as it understandably has thrown you for a loop. Hang on!
Think of this Will, how great it is that they could anticipate this outcome before it went sideways. Lots of time to worry lol. If I can help in any way, let me know, except my liver is shit. 😁 Lots of love, xx
Thanks as always Boots. There’s a bit of a sticking point with a rather large hernia that I have. Problem is well was is that I’ve had it for over 3 years. It was taking ages for it to get resolved and then I went on to the list so any other operation got postponed. Granted for the best when you think about it. What’s more important right, the hernia!!!!!
Well I was on the list for just about a year and it was getting steadily worse. The I got the transplant and I’m thinking, right rehab from that will take max a year so the hernia is due to be done in the next few weeks, or so I thought. This new spanner in the works had put a stop to that. So I was in hospital thinking that it was all going well, few weeks hernias sorted and then it’s back on my feet and crack on.
Now that’s not happening I felt as if as much as I’ve struggled to get by in the past 2 years I don’t think I could cope with having another 2 years of the same. So Edinburgh have suggested that they will do the hernia op. All being well I’ll be taken off the list at recover from that and then get signed back onto the list after I’ve recovered.
So unless I happened upon a transplant in the next few weeks (unlikely) I’ll get the op done, recover, go back on the list and hope that I’m a match before my body gets too week/rundown to make it through.
Only 2 problems that I can see and it’s ones that nobody can answer and that is how long would I be on the waiting list for until a transplant can be done and how long can the one that I’ve got sustain my body for until that then goes under the strain.
Fingers crossed the timings match up. Not been my best week ever but it could have been a lot worse. So fingers crossed.
At least they are on the ball. Sometimes it comes across as overly cautious at times but you are in safe hands. Out of interest, had you been admitted before with any issues post transplant?
Up until last month I was OK. Gradually getting my weight back and generally feeing good, well until this happen but it’s all just a waiting game now really.
I’d rather be in for test if they had a whiff of anything going wrong. I was always the oh it’s ok I’m sure it’s nothing sort. Not anymore!!!
Good news that you are straight back on the list. We met a 70 year old woman at the edinburgh clinic who had just had her third transplant and was looking good.Must be just as scary though . Xxx
I have to say it's what I dread, I was transplanted 4 years ago and will be 72 next month. I met a woman of 71 a couple of years ago at liver out patient's she had just had a second transplant and was doing incredibly well. I so hope you stay well enough to get the second transplant and resolve the hernia.
Hi Will, sorry to hear your new liver isn't too good.
At least you are back on the list, and I hope you don't have to wait too long for the call. Look on the bright side.....It's not everybody that gets a second ride on the merry-go-round😊😊😊. Try and keep your chin up, it will come soon, so get that bag packed ready for the off👍👍👍🤞🤞🤞
One was 18yrs ago and the 2nd and 3rd done 48hrs apart!
His 3rd was due to a blockage right after the second one within hrs of having it done!
I was prepared for my husband to die but they put him on the super urgent list for another transplant just hoping a miracle might happen!
It actually did as just as I was told there wasn't hope as his body was shutting down they got the call of another potential liver match!
He went on to have his 3rd..he did have a few hurdles to overcome and spent a lot longer time in hospital..but he came through it and has had no liver related problems since coming home from hospital and that was 8yrs ago!
So don't worry it will be fine!
I actually was told by a consultant that some people have actually had a 4th!!
Good luck and I hope it all goes well when you get the call X
Thanks for the words of encouragement. It’s a strange feeling. I feel Ok at the moment and long may that continue, but it’s good to hear that someone else has come through the same situation. I guess I can only cross my fingers and hope that it becomes available quickly. Not looking forward to another long stay in hospital or the rehab but at least I’m in a position for that to be an option. I’m sure that there are many people out there that don’t have that chance.
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