Parents transplant.

[Lilusa]

My mum has been called in for the 3rd time today, operation was cancelled again at the last minute. Finding it hard as I go away next week and scared she will be called in again. Can anyone who’s had the transplant tell me what your experience was like?

[Hidden]

Hello there Lilusa,

Just seen your post, I can relate to your mum, I am 68 yrs young, and I was also called three times.

It is hard, you can be left feeling a bit disappointed.

However, I wanted you to know that the one thing you should take away from each visit, is that they have not forgotten you.

There is a good reason why you were sent home.

They are the experts, they want only the very best for your mum.

The liver has to be the right one for your mum.

So when it comes, you can know in your heart, that they have researched and made absolutely the correct decision in the knowledge that it is exactly the right one for her.

I am delighted to say I was so lucky to have been called and transplanted on 30.03.19.. I can tell you that am still on a cloud of happiness.

If you have to go away, please do not worry, when the call comes she will meet it again with bravery, as it is a life changing event.

One in which she will be reborn.

So if mum is alone, try not to worry, I was totally alone when I went in. My husband was also in hospital, and could not come with me, all the same, I was so incredibly happy. So grateful, remembering constantly how lucky I was.

It is an amazing opportunity. One which many are waiting for.

For you I would say try not to worry, for mum, embrace the rebirth, and stay strong, stay fit.

Sending virtual hugs to you both, and hoping your mums call comes soon. Good Luck Jaycee.

[Lilusa in reply to Hidden]

Thank you so much! That really cheered me up! I don’t live near my mum so I haven’t been able to go with her when she’s called in. Since it’s been 3 times now we’ve got more used to the waiting process and not just jumping in the car and heading to Leeds (which is about 4 hours away) they made it seems a lot more urgent then it is. ‘You only have a 2 hour window to get to the hospital, then you’d go straight in’ every time has been a 12+ hour wait

[Hidden in reply to Lilusa]

I know the waiting can be hard.

Each time you are nearer to your goal. I live in Bournemouth and had to travel to London.

Not as far as your mum, of course it is urgent, because whilst there is seemingly lots of waiting. It is all testing and checking because at the final stage it has to be right.

There is so much for them to get into place and ready for this life saving opportunity for you mum.

Stay strong, stay brave, you are on the brink of re birth. You have to believe in the system as they only want the best outcome for your mum.

Jaycee

[Steak]

Hi it must be a terrible time waiting for the call then finding out it wasn't suitable. The donor liver has 2 be good and the plumbing right for the recipient. I have heard of many people who get a call then find its not suitable . Fingers crossed it's better news next time. Take care. I was under jimmys in leeds and I cannot praise them enough. Xx

[TT-2018]

I was transplanted on the second call and in total waited 19 months to receive the matching donor organ, after being listed.

In that time, it was a question of following the doctors advice and attending all the appointments. A five hour round trip every time and you are feeling terrible, but need to be continually assessed.

I took a few breaks and never went very far from the hospital, always checking with the coordinators and making sure that I gave the contact details etc.

Like Blackpearl, circumstances dictated that I went through the process on my own without any problems, when the call came. The staff at the Royal Free were able to keep my wife fully informed and I was constantly on my phone before the surgery. I was relieved when the ambulance arrived at the hospital and was prepared for waiting to get the go ahead. It was such a relief to be taken down to the theatre knowing that the donor organ was suitable. I am now nine months post transplant and things are going very well. I was in clinic last week and have excellent blood results, next clinic is in 3 months and is exactly one year after my discharge from the surgery.

Please go ahead and enjoy your break, life goes on and is what the transplant is all about, to allow us all to continue with our journey.

By its very nature, there is no way of predicting the outcome.

Best wishes and I hope that things will happen soon for your mother.

Mark.

[Oldred]

Likewise Blackpearl and other.I had my transplant on 1 December on my 5th call. It is stressful but at least you know you're at the top of the list. It was just as bad for my wife who was a is incredibly supportive. Just be there for Mum she will need support now and after. Remember to look after yourself too.

[Willh0]

Hi Lilusa, I can only speak from my own experience with this. I was called twice to go into hospital with a viable chance of everything falling into place and the transplant didn’t go ahead. On the third call it was all more subdued with a lot less excitement/apprehension about it. But this was the one that actually went a head. It’s a very difficult thing to do, prepare for the operation and be on standby 24/7. I was up and down emotionally, looking forward to I’d going ahead then the next second thinking it’s not going to go ahead. All you can really do it try and keep everyone’s spirits up and keep going. It will happen when everything is right. Looking back I was so disappointed with them cancelling the operations, but then I would be in a worse place if they did it and it wasn’t 100%. It’s hard but you will get through it and all the wait, emotion will be worth it.

Good luck

Will

[X19Dave]

hi operation was very good had some problems after but all sorted out hospital addenbrooks were fantastic do not worry about going away when you get back she will still be there and feeling a lot better I would help if you were near me ask friends and family and if she goes in video call her

Dave