Unexpected liver transplant due to une... - British Liver Trust

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Unexpected liver transplant due to unexplained liver failure

bowsandstars profile image
14 Replies

Hi, first post on here but i've been reading many of your posts for last few months. I received a liver transplant in May this year due to unexplained liver failure. Basically from first symptoms to transplant was 3 weeks. Listed on super urgent transplant list and thankfully received transplant within the days. Autopsy on native liver showed no signs of any underlying liver disease.

Recovery has been fine, in fact planning on going back to work tomorrow on phased return. I've had a few minor blips on the way due to deranged alts. Have had ultrasound, mri and biopsy all which appear normal and not showing signs of rejection. My biopsy was last month and although my alts were still deranged my adoport was reduced. Two weeks later and alt increased again so adoport was increased. At clinic today and if bloods dont improve I've to get another biopsy (im hoping the increase in adoport will hopefully sort bloods out).

Just looking to find out if anyone else has experienced these blips? I get very anxious everytime this happens and dread the follow up phone call from co-ordinators.

My husband must be demented with my anxiety and constant worrying. We have two young children and i know I should just be concentrating on them and not worrying so much.

Thanks

Carol

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14 Replies
h0b0 profile image
h0b0

Firstly let me say you must own the record of diagnosis to transplant. Wow, how lucky are you ? My partner was transplanted in 2016 & all I can say is that it took a while to get his medication right. If you are well enough to get back to work so soon then that's great news. Stay positive & I wish you all the best.xx

bowsandstars profile image
bowsandstars in reply to h0b0

Thanks. Yeah it all happened so quickly. From just feeling a bit off-ish, slight nausea and tiredness then slight yellow tinge to eyes....to three weeks later in complete liver failure, flapping hands and HE...to waking up with new liver. It helps to know that others have had some issues and needed meds tweaked. x

Hi and welcome to this wonderful forum of amazing friendly people!

Firstly! Wow on TP in such a short period of time and already looking to return to work ! I must say how lucky you were to have found a sucessful donor so quickly which was excellent news to read !

I cannot comment on your request as I'm not a TP patient but someone who's under investigation for possible liver issues.

I'm presuming you will receive numerous replies shortly from some lovely caring people who have undergone TP's and will be able to give advice based on there TP experiences.

May I wish you all the very best and take care of yourself especially with two small children to care for! Dont go over doing things so early ....

Love Trish x

bowsandstars profile image
bowsandstars in reply to

Thanks for the welcome x

Millie2014 profile image
Millie2014

Welcome to the forum. Its perfectly understandable that you would be worried. You have been through a traumatic experience totally out of the blue. I can only imagine what that must have been like. Im so pleased that your recovery has gone so well so far. I'm sure the Drs will be keeping a close eye on you so try to relax and enjoy your family life. Good luck with your return to work. Unfortunately I cannot help more but I'm sure your questions will soon be answered by the very kind knowledgeable people on this forum. Take care x

bowsandstars profile image
bowsandstars in reply to Millie2014

Thanks for being so welcoming. Yes I think they are being very cautious because of how I presented x

Popel profile image
Popel

Hi there congratulations on your transplant. I’m so impressed that your going back to work so soon I’m on my third week on a phased return myself after having mine in February and as far as my anxiety it’s exactly the same as yours or should I say was. And no doubt we’re not the only ones who feel the same. I’m also similar in that every ache or twinge I feel I’m like oh sh#t there is something wrong but I still ache from time. But the further along I go they’ve subscribed somewhat. I’ve also had kidney issues but only through my immunosuppressant medication as is the norm I’m told.so well done again and I wish you well when you go back to work. Paul

bowsandstars profile image
bowsandstars in reply to Popel

Hi, thanks for reply. Its def the anxiety that gets to me. I now seem to worry about all the risks/side effects of immunusuppresants as well as my clinic visits. I never used to be like this (i didnt know much about the liver until this)....and hoping it gets easier as time goes on.

Thanks

Carol

Popel profile image
Popel

Meant subsided lol

ThreeSmiles profile image
ThreeSmiles in reply to Popel

Thought for a moment why don’t you just click on the Unsubscribe button.....

ballie52 profile image
ballie52

Hi just a wee bit of positive advice..my husband has had 3 liver transplants..his first 17 yrs ago and his last one 7yrs ago...he has had many ups and downs during all this and tweeks to medication to get things right!

I'm so happy to hear you have made progress so quickly and going back to work!

When you go through a transplant you do have a few obstacles in your way but the doctors are great at picking up on anything that might be a potential problem like the doses of your meds being right for you and any other issues that you might have.

Everyone is different..some people have more issues than others along the way to recovery ..but some people like yourself go back to good health quickly.

You will have a few bumps along the way but it seems you are doing very well in thinking about going back to work!

Good luck with moving forward in your life and don't worry about what might be ahead as you now are through the worst and be positive about your future.

If you have any concerns about any aspect of your recovery the transplant team are always willing to give any support and reassurance. X

bowsandstars profile image
bowsandstars in reply to ballie52

Hi, thanks for the positive input. Reassuring to hear some positive stories.

Carol x

Hi

Firstly a very warm welcome to this wonderful caring forum. I think you are amazing to be thinking of work!! Love and hugs Lynne xxxx

bowsandstars profile image
bowsandstars in reply to

Hi, thanks for the warm welcome. Figure if my mind is occupied with work then im not worrying/getting anxious about all of this.

Carol x

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