Transplant question

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Transplant question

Postby StephenW » Thu Sep 20, 2018 9:23 am

Hi all

I've been given the good news that I've been put on the transplant list, but have not really received much other information (so this forum has been invaluable!) and I am wondering what changes I need to make to my daily life to ensure that I would be able to get to the hospital quickly, if I was called.

If the call came through at a time when there was little traffic on the road, and I was pretty much standing beside my car, I could drive to the hospital in about 1 hour 15 minutes. But I once did a similar trip in rush hour and it took over 2 hours. In kidney terms, this sounds to me like quite a long time. On the other hand, my wait for a new kidney could take years (or never) and I'd prefer not to spend the whole time keeping within sight of my car, at home, just in case the call comes through.

Currently, I quite often visit friends who live anything from about 15 minutes to 45 minutes drive from my home (in the direction away from the hospital). I also go for walks that may take me an hour, or so, away from home. I don't really know whether I should be giving up these kind of activities, or whether the journey time is not that critical.

Any insight or experiences from other forum members would be much appreciated.

Best wishes

Stephen
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Re: Transplant question

Postby wagolynn » Thu Sep 20, 2018 2:37 pm

Don't worry, a theatre has to be made available, and got ready, staff to organise, and the kidney will have to be checked and tested before they are ready to operate.

If you make the transplant team aware of the worst case time to for you to get there they can take that into consideration.

Best wishes.
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Re: Transplant question

Postby Skm » Thu Sep 20, 2018 7:43 pm

Stephen,

Don’t worry.
I live an hour away from my transplant centre also. I wanted to visit family for Christmas who live a further 3 + hours away so it would be a minimum of 4 hours away (assuming holiday traffic was light!!!). The transplant nurses said it was no problem as long as I was willing to return. It was not required.

As it turned out I got the call in the early hours of the morning 6 months later. I understand that this is the most common time to get “ the call”. Life has to go on. It could be years before you get the call. You have to live your life. I would suggest having a chat posing the same dilemma to your transplant nurses who I am sure will be reassuring.

Best wishes.
Hope you get the call soon

Sue
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Re: Transplant question

Postby Rik » Thu Sep 20, 2018 11:18 pm

I too would say don't worry ...
my call came via the answerphone at home whilst I was on the way back from a weeks holiday in Spain ... we didn't get home til 1:30am the clinic had called about midnight ...
it will be when it will be ... the only thing I would suggest is to put it to the back of your mind and don't let it be the first thing on your mind ...
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Re: Transplant question

Postby StephenW » Fri Sep 21, 2018 9:38 am

Many thanks for the replies and the reassurance!

I'll try not to worry too much :D

Best wishes

Stephen
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Re: Transplant question

Postby AllenC » Sat Sep 22, 2018 3:38 pm

As others have said, it's not a problem.
I often go camping with friends for a weekend. It wasn't a problem.
They asked that I phoned the transplant nurse before going to give them an idea of how long it would take me to get home.
As it happened, the call came one afternoon when I was home....and no need to drive....they sent a taxi for me.
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Re: Transplant question

Postby StephenW » Sat Sep 22, 2018 6:43 pm

Thanks, again. I doubt if they'll pay for a taxi, though. A 70 mile trip is going to be costly and I imagine taxi drivers are very reluctant to do it because they have to drive back empty. So I'm working on the assumption that I (or my wife) will have to drive.

Cheers

Stephen
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Re: Transplant question

Postby rheaybou » Tue Sep 25, 2018 9:35 am

It was about this time 7 years ago I joined the list. Any call at home or on my mobile woul dhave me jumping and rushing to the phone.

When going away for a few days I was just asked to let the transplant unit know (within UK) and would be taken off (suspended) the TX list for time out of the UK on holidays. Keep you mobile charged and try your best to put it to the back of your mind. Good luck and keep well.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: Transplant question

Postby AllenC » Sat Oct 06, 2018 2:19 am

StephenW wrote:Thanks, again. I doubt if they'll pay for a taxi, though. A 70 mile trip is going to be costly and I imagine taxi drivers are very reluctant to do it because they have to drive back empty. So I'm working on the assumption that I (or my wife) will have to drive.

Cheers

Stephen

That really isn't the case Stephen.
The NHS will have contracts in place with local taxi companies. They also have ambulance transport to get you there.
Just live your life as normal. Keep them informed if away from home.
Best wishes for an early transplant.
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Re: Transplant question

Postby Notso » Sun Oct 07, 2018 10:43 pm

Stephen, I wouldn't stress too much. I'm from Darwin in Australia and our kidney transplants are generally done in Adelaide, 2000 miles away.
Should a Darwin recipient get the call they have a 3 1/2 hour flight between airports let alone the fact that there are only a handful of flights per day.
I think you'll be fine.
Good luck.
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Re: Transplant question

Postby StephenW » Mon Oct 08, 2018 9:13 am

Thanks for the replies.

Living in East Anglia we tend to think we are a long way from civilization...and then someone from Australia puts it into context :)

Best wishes

Stephen
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