Phone call

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ste
Posts: 10
Joined: Mon Dec 16, 2013 12:55 pm

Phone call

Post by ste »

I recieved a call to go to Hospital(manchester) on Monday night(18th May 2014) to be a backup for transplant of the kindey,I got to Hospital around midnight.I finally got told at Midday on the Tuesday,that they were going with the primary recipitant,and I could go home
I knew I was only on backup so no problems,and I now know the procedure,as they treat you as if you are going for the op
I have been on the transplant list 15 Months,and this was the first call i have had.
Can anyone tell me if I will recieve more calls now? or if they have experiance of being called more often or have waited months/years between calls?
Does this first call mean I am towards the "top of the list"
I know the list is not a perfect science etc and depends on the Match etc
Thanks in advance
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Phone call

Post by MandyA »

Being called as a potential transplant recipient definitely does not mean that you are "at the top of the list" and will get another call shortly, as that is not how the list works....

It is not a list where you start at the bottom, and work your way up to the top as the people above you get a transplant.

Every day, new people join the transplant waiting list.

Every day, people are taken off the waiting list permanently because they are no longer fit enough for a transplant, or they die. People are also taken off the waiting list temporarily (suspended) because of short term illnesses, holidays etc.

For each kidney which becomes available for transplant, points are allocated to every person on the waiting list at that moment in time. The algorithm which is used to allocate the points is complicated, but you can see it on the UK Transplant website. Points are awarded for tissue type match, age match between recipient and donor, younger potential recipients get more points, you get points for the length of time you have been on the waiting list, you get more points if you are geographically closer to where this particular kidney is, and you get bonus points if the kidney is at your transplant centre, etc. A computer in Bristol works out everybody's points score for the specific kidney which is available, and the person with the most points gets offered the kidney first.

You could get several calls where you are the backup recipient, and you don't get the transplant because the named recipient receives it.

You could get several calls where the kidney turns out not to be viable when it arrives at your transplant centre, so it can't be used.

You could get a call and then be assessed as unfit for a transplant when you arrive at the hospital.

The cross match results might rule you out.

You could get one call, and then never get a second one.

I waited three years and seven months for my first call up, when the kidney turned out not to be viable, so I was sent home.

I then had a second call after four years and three months on the waiting list, and that resulted in a successful transplant.

I'm sure there are other members of the forum who have had more calls which did not result in transplants, and some who have waited considerably longer, or shorter, times.

Good luck,
Mandy
ste
Posts: 10
Joined: Mon Dec 16, 2013 12:55 pm

Re: Phone call

Post by ste »

Mandy
Thanks for your reply
I understand the list is not a list as such,with someone at the top,and new people joining the list at the bottom
The points you listed I am aware of
I was hoping some people may come on with there own stories,as to how many calls they got,how many as backup,primary etc
I have only been listed 14-15 months,so not long compared to others
Thanks
Ste
DeanH
Posts: 67
Joined: Thu Feb 12, 2015 5:01 pm

Re: Phone call

Post by DeanH »

Hi, I was on the list from dec 2013 until I had a kidney and pancreas transplant match this year, in that time I had 5 phone calls that were unsuccessful due to either the kidney or the pancreas being unviable, on none of these hosp visits was I told I was the primary or backup recipient, in the cases where the pancreas was by viable I was told that the kidney would go to someone else which was always a relief to hear. Good luck
And hope you don't have to wait too much longer.
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Phone call

Post by AmandaClare »

I had one call and got the kidney, after waiting 2 years 3 months.

However that was 27 years ago. I suspect people these days get more calls, on average, because procedures have changed. Also perhaps because they consider more organs now, rather than just the perfect ones, and are likely to decide some are not suitable for transplant at a later stage.

I hope you don't have too much longer to wait.

Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
ste
Posts: 10
Joined: Mon Dec 16, 2013 12:55 pm

Re: Phone call

Post by ste »

Amanda
Have you still got the same Kindey?
If so,I hope when i got one it lasts as long!!!
Cheers
Ste
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Phone call

Post by AmandaClare »

Yes, 27 years and counting!
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
ste
Posts: 10
Joined: Mon Dec 16, 2013 12:55 pm

Re: Phone call

Post by ste »

Hello
I got another call 9 days later, and my third call yesterday, sat 20th June, all calls as backups
It turned out 3rd time lucky for me, as I was transplanted last night at around 22.30☺
Its a bit sore, but not too bad, hopefully the kidney will work for me.
Good luck to everyone else on the kidney list, and hope you are lucky like I was yesterday, I am keeping everything crossed that I won't have to return to the waiting list in the near future
Ste
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Phone call

Post by MandyA »

That's good news!

Hope your new kidney works well, and that you recover from the operation quickly.

Mandy
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Phone call

Post by Grey »

It's only a bit sore because you are probably still on morphine....Good luck with the transplant. Mine was done 4 weeks ago and I was discharged after a week.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Phone call

Post by rheaybou »

Some people are given morphine post TX? It's not a very kidney friendly drug and something not used in Sheffield. I was given IV paracetamol and the pre op epidural / spinal block invection and that was it.


Oh and some Tramadol, lovely sweet tramadol...........


Anyway, great news about your call and long may your kidney stay with you.
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.
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Phone call

Post by jooles »

Hooray. Congratulations!
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Phone call

Post by AmandaClare »

Great news, Ste! Keep us posted.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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