Called for transplant : Hi all I... - British Liver Trust

British Liver Trust

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Called for transplant

Maxey666 profile image

Hi all

I qualified for transplant about 6 week s ago and have since been called twice which I understand is pretty good going. I was called at half past ten on Monday evening and rushed upto Kings 20 minutes later. The nursing team instantly went to work with ECG , obs and blood tests etc.. one of the transplant coordinators came and saw me and said that a liver was on it's way and if all ok then I would be taken to theatre very soon. Then at the 11th hour a member of the surgical team came onto my ward and said a biopsy had been undertaken and the donar liver deemed to fatty so transplant would not go ahead. I was / Am gutted as I thought this was it. Talk about how to experience a roller coaster of emotions in one fail swoop along with a feeling of numbness and exhaustion. I left the hospital bidding goodbye and thankyou to all concerned, walked to Denmark Hill and jumped on a train home. When home my wife and I had a long talk and shed a few tears over what had just happened. I laid down on the bed and drifted into slumber land with everything that had happened going around in my head.

I think I'm extremely fortunate to be called twice in such a short space of time and sure my time will come soon.

41 Replies

Good Morning Maxey

I've just this very moment come across your early morning message which was sad to read as I cannot comprehend how you must be currently feeling after this second roller coaster ride was stopped in its tracks due to the donors liver being fatty!

I'm not sure if your a believer in fate but I truely am, and somewhere out in this vast world we live in is that perfect liver destined just for YOU !

Unfortunately I cannot remove the disappointing feelings but you must keep focused as your day WILL come with lots of wonderful things you'll then be able to do!

Please hang on in there and keep believing it WILL HAPPEN, and it will when the stars are in alignment just for you only!

Loads of love with a hug from me!

Shropshire Lass xxx

Maxey666 profile image
Maxey666 in reply to

Good morning

Thanks for your positive thoughts. Sometimes I think I would feel lost without the amazing people on this forum that I can relate to. x

in reply to Maxey666

Just keep smiling as life's to short ☺️☺️☺️☺️ x

Yuiop profile image
Yuiop in reply to

Hand tight, it will happen.x

Maxey666 - I'm touched by your telling of it, especially that return to Denmark Hill Station, my tears are for you. What an ordeal. Here's hoping the right one comes very soon.

Peter_Plymouth profile image
Peter_Plymouth in reply to

Ah Denmark Road Station - that brings back a whole raft of feelings both good and bad. Still I’m grateful to now be on the slow road to recovery. I was called 4 times before the right one was found and I’m sure you’s Is our there somewhere and hopefully you’ll be called soon for your TP

in reply to Peter_Plymouth

Peter_Plymouth, I believe you meant that reply for Maxey666 - he may not notice it because you have replied to me, not him. Ahh, Denmark Hill Station. Definitely not Carnforth Station. And definitely no Refreshment Room either :-)

Peter_Plymouth profile image
Peter_Plymouth in reply to

Well it’s my fault 4thPlinth - I started replying to you as regards Denmark Hill but then drifted onto the original topic. In the end decided to leave it where it was and you were good enough to answer. You never know what random chance life brings you. When was your TP?

in reply to Peter_Plymouth

Sadly, I was there for one week with my sister then I took the train to where she was transported to a hospice by ambulance. She had Motor Neurone Disease.

Peter_Plymouth profile image
Peter_Plymouth in reply to

So sorry - I didn’t mean to cause any upset. I do hope that life has treated you more kindly since then.

Best wishes - Peter

in reply to Peter_Plymouth

Life is Life. Even when it hurts. I have a lot to enjoy. I understand that I have only this moment. It helps me no end to enjoy the good and endure the not-so. I hope you are getting better by the minute, and lots of people will be around the hospital bed (virtually) very soon to wish you well. BTW, I have PBC.

Hi so sorry it was a false alarm again you must be devastated but at least you know you are a priority to them they are busy searching for your petfect liver and i know that WILL come soon. Xx

Hi Maxey, I'm sorry your TP didn't go ahead as you'd hoped, but just keep the faith, and a suitable one will come along soon, with 2 calls so soon after being listed, you are on their priority list, so, please God, you shouldn't have to wait long. I imagine the emotions are very difficult to cope with, when you are so near,and then your hopes are dashed. Your time will come, and I will pray it's soon.

David

Maxey666 profile image
Maxey666 in reply to davianne

Thanks David. All ready for the next call.

davianne profile image
davianne in reply to Maxey666

That's great Maxey, stay positive😊😊😊 👍👍👍🤞🤞🤞

David

Awesome twice so quickly! Your time is near I am sure, we are all keeping everything crossed for you. I was called three times and then had my rebirth. So you never know maybe it will be 3rd time lucky for you. I quite liked the calling up even if it did not go ahead, at least I felt they had not forgotten me, my time was near!! It was. I am delighted to say, so stay strong, stay fit, your rebirth is beckoning to you. Have a good day Jaycee

Maxey666 profile image
Maxey666 in reply to

Hi Jaycee19

I'm so looking forward to a sense of feeling normal again. I was chatting to one of the transplant coordinators during the small hours and she said that many people post transplant didn't actually realise how poorly they were until they start to feel like they were before getting liver disease.

Hi Maxey, big believer in one step at a time, lets all get your through transplant first.

The whole group here are waiting in the wings to stand by you, cheer you on in the good times and hold your hand in the bad times.

This group is awesome.

There are so many out there who may have experienced exactly what you are going through.

So stay strong dear Maxey, your time is at hand. We are all in the same boat, yours is on its way...

I felt nothing truly nothing before transplant, I had cancer in the liver.

I was a so fit. Not without a few issues but mostly I felt great...

Everyone is different.

Like any good Boy Scout “Be prepared”.

Stay strong,stay fit, stay happy.

Drink lots of water after transplant and I mean lots !!

It really helps. Try to walk asap as well. Baby steps but take those steps.

A doctor used to see each patient on ward round and say to everyone - Smile at at least 5 people every day it is infectious.

Have a great day. Jaycee.

Maxey666 profile image
Maxey666 in reply to

Hi Jaycee19

You're absolutely right. I certainly don't want to run before I can walk and thanks for your post transplant advise.

Hi

I'm so sorry it didn't work out for you this time but at least you are a priority now. Third time lucky. Thinking of you and your wife. Love and hugs to you both Lynne xxxx

Maxey666 profile image
Maxey666 in reply to

Hi Lynne

Love and hugs to you too. How are you getting on? Xx

in reply to Maxey666

Thank you. I'm not brilliant at the moment but hey ho, there are people worse than me. Take care of yourself. Love and hugs Lynne xxxx

Trust1 profile image
Trust1Administrator

Hi Maxey666

We are thinking of you and really pleased to read how supportive the forum is to you.

take care

Trust1

Maxey666 profile image
Maxey666 in reply to Trust1

Thanks. This forum offers such amazing support . It certainly helps me getting my head around everything.

Trust1 profile image
Trust1Administrator in reply to Maxey666

That is just why we are here :)

Oh Maxey, what a blow but keep your chin up my man, your turn will come, they're just waiting for a perfect liver for you ! We are all rooting for you and sending love to both you and your wife. Stay happy, keep smiling

Laura xxxx

Maxey666 profile image
Maxey666 in reply to Laura009

Thanks Laura. All ready for the next call xx

Ahhh Maxey ☹️ Know that feeling but there’s one thing for sure you aren’t being forgotten 👍. Another call very soon for you I hope. Wishing you good luck - along with the best wishes from the rest of us here.

Maxey666 profile image
Maxey666 in reply to ThreeSmiles

Thanks

Hi Maxey I’m a big believer in fate. That liver wasn’t meant for you, but the right 1 is coming and will be for you. It’ll be like Christmas once you do receive it.

Have patience and hope. Jane xx

Maxey666 profile image
Maxey666 in reply to P13jne

Thanks Jane. It'll be all my birthdays rolled into one. I don't really remember my 50th because I was in hospital with hepatic encephalopathy.

What a bummer Maxey. Best to get ready for the next call and don't look back! Many prayers for you both. X

Hi matey. Only just seen your post. Sorry to hear about your abortive trips to KCH. I had four abortive trips. The teams involved will be just as gutted as you. It will happen. I heard of a lady from Plymouth who went 26 times! I was told that 5/6 times is average and the wait could be 3 years though I only waited .13 months. It's worse when you've been called once because you know you're at the top of the list and you're living on a knife edge waiting for a call. THE call will come.

Cliche i know but , fingers crossed, 3rd time lucky 👍 I do hope. Before to long you'll come to know and love Denmark Hill station as I do with your weekly then monthly etc visits to liver outpatients! The nursing team and transplant coordinators at Kings are incredible and you'll be well looked after. I'm just over a year post transplant, listed and received my gift just 6 days later. A perfect liver will come and soon I'm sure. In the meantime let's us all know how your doing and don't forget to let us know when the big day arrives. The very best of luck and best wishes.

It will happen it's better 2 be sure the liver is suitable as there is no point doing the transplant 4 it 2 fail. I was 1 of the very extremely lucky 1s as only waited a matter of hours as I have rare blood group. Let's hope it's 3rd time lucky 4 u . As u said u have had the call twice in a matter of weeks. Take care .

Maxey666 profile image
Maxey666 in reply to Steak

Thanks Steak.

How are you getting on post transplant?

How are you feeling?

Steak profile image
Steak in reply to Maxey666

Hi feeling good so far it's been about 18 weeks now. Kidneys apparently need watching at moment have lowish white blood count but that could be caused by the mycophenolate pills am on . Became diabetic after op on insulin due to blood sugar levels but am hopefully going to try tablets. I was extremely jaundiced and very tired most of time b4 operation and after op the yellow had almost gone from my eyes my family couldn't believe it . I was extremely lucky to get the liver after such a short time . Your time will come. How do u feel day to day.

Maxey666 profile image
Maxey666 in reply to Steak

Hi

I feel washed out and exhausted which is so frustrating.

Yes that was how I felt all of the time b4 I didn't realise how sick I was thats why I was glad I got the transplant so very quickly. Fingers crossed u get transplant very soon pls let me know.

Maxey666 profile image
Maxey666 in reply to Steak

Will do and thanks.

Hi Max,

Try and stay positive I am sure your transplant will take place soon.

It is all very daunting when you get yourself all ready and the anxiety that runs along side of doing so - and then all is canceled. It will happen and when it does we will all be sending our best wishes.

I am waiting to be seen at Brompton myself for something totally different.

It is always nice to talk to other's that understand what you are going through - my liver is fatty and enlarged but my issues are autoimmune.

Keep your chin up my fingers are crossed for you. Xx

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