13 months post-transplant and quality ... - British Liver Trust

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13 months post-transplant and quality of life

Hello. I had my liver transplant on the 15th August 2017 and have recovered pretty well so far. My operation had several problems including my kidneys failing, 2 seizures and internal bleeding. I seem to be suffering from a little brain fog, anxiety and a fair bit of low mood which I presume is the Ciclosporin I am taking (125mg/day).

I am a little bit worried about my quality of life. Of course I am grateful for my transplant but I do struggle on a daily basis just to be happy. Is this a common feeling?

Many thanks, Andy.

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AndyEssex,

Really sorry that things post transplant aren't going as well as you hoped.

Setting gratitude and 'glad to be alive' aside. Feeling low / depressed is a known post transplant experience, almost a feeling of anti-climax.

I suggest that these feelings should be raised with either your GP or transplant team, probably your coordinator.

Don't bear these difficulties alone and it's clearly positive that you can say here how you feel.

I do speak from experience having had lifelong depressive symptoms. Pre transplant assessment included a session with a psychiatrist as they wanted to make sure I could deal with the procedure and afterwards.

Please take care of yourself and keep in touch with us here in the group.

Jim

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Thank you very much. I'm really hoping that it will gradually improve over time.

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Hiya Andy, you look well btw 😊

I am nearly 2 years post and I have to say it's been a hard slog and just having another blip with my kidney function dropping dramatically I also don't have the same energy I did before I got poorly and most days have to nap to revive my energy it seems to be a common thread and I do think there is only a handful of lucky people who get back to some kind of normality ... Energy wise ... I am just grateful I am still here and able to enjoy life still, as I am sure you are as well 😁

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Thanks, and yes absolutely I am happy to be here because my operation was a difficult one and I barely pulled through hence 58 days in intensive care. I seem to pick up on a common issue post transplant which is quality of life and I know that I will have to feel much better to be able to do half of the things I used to do. I'm just hoping the side effects of the immune suppressants continue to subside x

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They will definitely subside just takes a few months for the body to adjust which ones are you on?

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I've been on Ciclosporin for 13 months. My current dosage is 125mg a day split into 1 x 50mg dose and 1 x 75mg. I started off in hospital on 400mg and have now reduced as far as my blood tests will allow. I get the ringing ears every day all day. I just wondered if anyone has had the same side effects still after 13 months, and if so, did it eventually go away? 🙂

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Oooh that is a long time to have them I have no experience with that particular tablet, what have your docs said about it? I know my husband suffers with tinnitus constantly and he got that after being in a coma for 3 months so maybe it's the effects of the trauma on your body ?

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To be honest I don't remember having it after my operation but then again I was on a lot of IV medication back then. Unfortunately it is a side effect of my immune suppressants so I'm guessing I'm stuck with it. I spoke to a guy who was 2 years post transplant recently at the hospital and he is on the same medication and has never had ringing in the ears so I guess it's just case dependant.

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Looking good Andy.

I would need major poly filler to look like that.

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You mean concrete?

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Oh my im so bad Brett - it was meant to be a joke but maybe i wasnt funny - well im not often funny Aagh - well i could always blame the fog #the times all the mine, the times all mine # famous song 😀

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Never lose your sense of humour, laughter is the best medicine

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Or maybe eve the Tyne...more brain fog 😏

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I only use the concrete if I’m going out on the pull 😂 or if there is a hot new doctor at the hospital

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Congratulations on the transplant and being alive and well a year on.

I think you are possibly suffering depression, the fact that you have had a life saving operation makes no difference to depression, you could have the best health possible and win the euromillions tomorrow and still suffer depression,

Have you spoken to someone about these feelings? Perhaps you should look into it, I hope you get to the bottom of this hiccup and begin to enjoy your new lease of life 💕

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Sorry to go off subject here, but I noticed that 2 of you guys had kidney problems after surgery,

Did you have kidney issues before surgery? Did it come on as part and parcel of liver disease? Is this what happens to everyone? x

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Hi, think the kidney problems come from the immunosuppressants that you take after transplant for a lot of people, that is what’s happening in my case, I had no problems before transplant and when my tacrolimus is reduced kidney function improves but then my liver function starts to play up, 🤷‍♀️

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Oh 😕 so it’s not over once you get a new liver then? 😞

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Thanks for your reply. My new liver arrived several hours after my old one gave up, causing my kidneys to fail. I never experienced any kidney issues beforehand. I was on dialysis for 8 weeks in hospital before my kidneys started working by themselves again. My kidney function is not yet anywhere near its best and also I am able to get away with only 125mg of Ciclosporin every day which has helped their function too. Post operation I was on 400mg a day and have been reducing ever since but cannot go any lower now.

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Wow so you really did take it to the brink! Your probably still in shock about the close call you had 😲

So not only did you have major stress before your surgery but you are having to deal with extra problems afterwards, it’s not surprising you don’t feel like a new man, you certainly look great but the head stuff nobody can see. I hope you have a partner, friends or family around you that you can sound off on and hope that these added things are resolved soon so you can move on

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Hiya ms Chantelle I had problems for about a year pre transplant with my kidneys I went into kidney failure about 4 times but I was too poorly to realise I didn't think post I would have any but the antirejection tablets as fantastic as they are for keeping us alive they are not very friendly to our kidneys but it's not a common story thank god 😊

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Hi Jojo glad to see your back how are you ?

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Hiya hunni I been to see kidney specialist on Friday, took bloods to check if I have any particular infections but he talking about doing a biopsy... Have you had one? As no idea what to expect lol

How are you doing? 😘

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Hi Jojo, I’ve never had a kidney biopsy only liver biopsy, I have had an ultrasound scan of my kidneys but not got any results, I’m just knackered all the time but I don’t know if that is down to PBC returning, take care 🌸🌸

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Oh god that’s awful 😞 I can’t understand why I’m having to learn all about these awful things in here rather than from my medical team.

Each time I come in here I read more and more bad stuff, both pre and post surgery. It’s so deflating 😞

Thanks for replying and I hope your kidneys and everything else improve

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Hi ms

Its not all bad you know! A lot of what is written is personal experiences and that will naturally be towards issues faced because this forum is meant to try and make newcomers aware of problems that might be faced and, hopefully, how they are overcome.

It would be nice if everyone on here said im going for my transplant tomorrow and then said two days later, hey i had a kick about with Ward 4 in the corridor this afters. Sorry thats a bit facetious (?). We all know what an enormous operation a liver transplant is, and so complicated, no wonder its not always plain sailing. BUT, i think we nearly all are so grateful for the “new” lease of life that we can put up with some setbacks along the road to recovery.

So, please dont be deflated, rather stand proud (#thats what my daddy said# - old song no doubt way before your time 😊) and #be happy# (yet another oldie lol).

I can’t find what your issues are? But whatever they are I hope you get better soon.....

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Hiya mschantelle please don't take much notice of the bad stuff I would do it again and again and again if I had to, my quality of life is 1000% better than before transplant and I am out and about I have my independence and I can be left alone and have a bath in peace I took the little things for granted before getting poorly I will never make that mistake again .... We are all individuals and some have hardly any problems pre or post transplant I had other things and still do concerning my health but I am over the moon to be alive and as healthy as I can be xx 😘

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Hi andy

Wow that was a very close call then! Hope you continue to improve bit by bit.

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Hi AndyEssex

My, you look great.

I had my tx about 7 weeks before you. The brain fog did take a time to lift and I found I had some slight brain damage, affecting my speech and handwriting. This is because I had v bad HE when operated on.

Like Jojo I don’t have as much energy but bizarrely I’ve not had as many colds as usual. I do have continual UTIs which are difficult to treat as they don’t want me continualy on antibiotics.

I have had counseling for the past 10 months due to PTSD which I had been suffering for decades. I think that this has helped me not get the blues. I feel the happiest and the most healthy I have for years.

I suggest you speak with your gp or the tx coordinator as you, too, might benefit from talking to someone. It’s a hell of a thing we’ve undergone. Good luck

Isabelle

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Thanks Isabelle. My surgery had a few complications including kidney shutdown and seizures so it's taking longer to recover. I was very active before and I really thought I'd be back at work a few months after leaving hospital but that is obviously not the case! I struggle with tinnitus due to immune suppression and it drives me crazy every day.

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Titinus must be pretty unbareable. We all have to accept that we will never be the same person as before. I tire more easily, have my UTIs and painful hands due to immune surpression but I’m here for my girls and hubby. I think that having gone through a near death episode (yours and I was so ill the drs had to vote to see if they thought I was worth a liver) once we get over the shock, it is good to talk to someone. They are not family and not one of the medics who care for you. You can be 100% honest and it may help you to put things I to perspective and be a little less anxious about the things you can/can’t do.

All the best Helen

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Hi Andy.

You look great! I have not had a transplant but have had a TIPSS. Still may need a transplant at some point but we will see when the time comes. Hope I will look as good as you afterwards!

This thing called PBC is quite a lot to deal with. It has totally changed my outlook on life, etc.

Stay strong my friend. And please share your concerns with us and also with your medical team. We are here for you my friend.

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Thank you very much. I will bring this up with my doctor when I see him soon. I was a very active person before the transplant and I've had to rest a lot. I lost kidney function and had 2 seizures during surgery so recovery has been longer than I anticipated.

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Hi again Andy!

I think it’s even harder to deal with this liver crap when you’ve always been active!!

Prior to all my stuff last year I was always on the go...camping with scouts, kayaking, hiking. That’s what depressed me so badly I think! Well, that and also dealing with your own mortality. ☹️

But, you’ve got to stay positive. I know the good Lord’s got plans and isn’t done with me yet. Otherwise, I wouldn’t still be here. Sounds like that with you too my friend!

Stay healthy and fight the fight!

Wanda

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Hope you are doing better x

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Hello

Thanks for asking. I don't post that often on here but I still get an email for new posts and read them every day.

I received a letter a few months ago from my doctors surgery saying that they would no longer be able to fund my immune suppression medication and that I would have to contact the hospital. I arranged to receive my ciclosporin medication from the Royal Free last week. It was the same chemical but a different brand and I reacted very badly after a few days. Very bad shakes, brain fog, tinnitus, cramps etc etc. Fortunately I received a call earlier from the hospital today to say that they have managed to get the brand that I have been taking for 18 months. I realised how the side effects had gone down so much yet came back with a different brand.

I still feel like every day is a struggle. 8 weeks ago I had a large incisional hernia repair and it had to be done again within 48 hours so I'm still very tender right now. I maintain a positive outlook on things and hope to heal from the hernia operation in the coming months.

Thanks, Andy.

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Hi Andy. I have just read through your posts. I am 9 months post transplant and did have some reactions to the immunosuppressants in the first few months, mainly the tinnitus (which has gone now) and shaking hands and I still have that a bit now. If I were to use a screwdriver or anything that involves dexterity of the fingers then I still get the trembles. My short term memory is not brilliant but I think it is more down to illness pre transplant rather than any meds I am on now. I too was a bit down after transplant but then it's not surprising because it's a huge operation to recover from and my recovery was quite slow. You of course on top of all this had the added problem of a hernia .I have a problem with my bones now which is a bit of a downer but I'm just trying to sort out my best options at the moment. We go to transplant sometimes mistakenly thinking that this is going to be the end to all our health problems ( and for some it really is) but you read on here of many people experiencing problems post transplant. So I suppose what I'm really trying to say after all my waffling on is that you are not alone, we are all striving to be as well as we can possibly be and thank goodness we are here to moan about our problems :-) :-) Its great that the hospital has been able to get the meds now that you are accustomed to. I hope that you make a speedy recovery from your hernia op and that life starts to get better for you. All the very best. Alf.

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