Got the Call!

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jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Got the Call!

Post by jooles »

Thanks for all the good wishes and crossed fingers! Still waiting to know for sure. Think kidney is on its way from Tooting where they are now doing final cross match tests. Think ill be prepped for theatre and be literally waiting whilst they make final call for results and then either all go, or all go home around midnight. So for now, it's Daniel Craig and 'Quantum of Solace'! Not bad!! Only thing is I have had a cold - it's worse on the evening so feeling a little sniffy! Staff have been lovely-PD nurses have popped in to ward to say hello and everyone is so excited. Bumped in to my consultant of 25 years, who gave me big hug! All very lovely... Decided not to engage at all with the reality of the situation though - so joking away and being quite flippant really. Only way I can cope really. Think my true journey may only just be beginning....... Dreading the pain but am sure the overwhelming feeling of good fortune will see my through.

May well be tucked up and hooked up to my cycler by 1:00 am! Meanwhile, I a, very very grateful for a
L kind wishes. You really are an amazing bunch!


Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
lashy
Posts: 67
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Re: Got the Call!

Post by lashy »

What an amazing time for you and your family. I will keep everything crossed for you.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Got the Call!

Post by MandyV »

They are certainly making you wait! I thought my 8 hours plus was bad enough .... If it goes shear font worry about the pain, they will give you plenty of pain control and you know it is only temporary ... Fingers crossed!
lashy
Posts: 67
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Re: Got the Call!

Post by lashy »

Excellent news, for you and your family. I will be keeping you all in my thoughts x
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Got the Call!

Post by jooles »

Good morning kidney friends
So, at midnight last night I was told that they had found a two centimetre cancerous tumour on the left done kidney. They had no way of knowing if it would spread to the right kidney (the one allocated to me). It would take another 24 hours to obtain that information by which time the kidney would not be viable for transplantation.

So I am home.

How do I feel? Extremely grateful to have had the opportunity; secure in my knowledge that our system works; hopeful for the future; overwhelmed by the support I received yesterday - and may be this morning a tiny. It disappointed.

But for all of you out there waiting, it is true that you never know when it's your time - make sure that bag is packed and ready and count your blessings for an amazing NHS!


Thanks you so much for all the good wishes - now it's back to the drain pain / laxative problem - oh, and work next Monday!,,,,,

Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Got the Call!

Post by Dixie1 »

Hi Jooles

I just don't know what to say. I followed your thread all day yesterday and was really rooting for you and now that I have read your post this morning I can only imagine the disappointment. Talk about a rollercoaster ride........ What an incredible lady you are to find so much positive in your situation. Truly you are an inspiration. What you have written in your thread has given others so much insight. I said to my husband that your thread, although it made us both feel incredibly sad (I have been reading it out to him), is an enormous help to me and all part of the support I find I get on this forum. It helps prepare for all the highs and the lows and to manage expectations.

I hope SO much Jooles that you get this opportunity again, very soon. Sending you a huge hug.

Dee x
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Got the Call!

Post by jooles »

Dee - thank you for your beautiful words. I am feeling a little more tearful as this morning progresses - but am pleased that tonight will see the end of what has been my 'Annus Horribilis'!

Here's wishing you a very happy 2014! I agree, this forum is a source of such comfort to us all.

Love
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Got the Call!

Post by MandyA »

I'm so sorry, Jooles.
You must have been so excited, and then so disappointed.

I hope PD is going a bit better for you now, and good luck when you go back to school next week.

Mandy
Rik
Posts: 1734
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: Got the Call!

Post by Rik »

really sorry for the rollercoaster Jooles..
but in the end it's better to be safe than have something that will lead to more problems
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Got the Call!

Post by AmandaClare »

Sorry, Jules. What an exhausting day for you. Hope the call comes again soon.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
cathys8
Posts: 76
Joined: Fri May 18, 2012 9:15 am

Re: Got the Call!

Post by cathys8 »

Ah jooles you poor thing. I've also been keeping a close eye on your thread and praying it went well for you. I feel really disappointed for you. I suppose you just have to look on it that it wasn't the kidney for you and that the right one will come along.

chin up
Cathy x
40 yr old with Alports syndrome
CAPD since Sept 13
Nov 2012 - listed for transplant
27 Mar 2014 - I got the call!!
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Got the Call!

Post by jbell »

So sorry jooles cannot imagine how you are feeling. am hoping things get better for you in 2014 and you get the call again very soon, thinking of you jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
suz
Posts: 57
Joined: Fri Apr 10, 2009 7:33 am
Location: Australia

Re: Got the Call!

Post by suz »

Hi Jooles

I have been following your thread and hoping all would go well for you. I have been in a similar situation to you but through the paired donation scheme. Twice in the last 4 months it almost happened. I think of it as as my practice run and I am now (I hope) better prepared for the real thing when/if it happens.
Hope 2014 is a much better year for you.

Suz
lashy
Posts: 67
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Re: Got the Call!

Post by lashy »

Cliche warning.....when you have had time to 'mourn' this kidney, and you finally get a healthy one, which you will, this time will be just another step on your TX journey.

I can't possibly imagine how you and your family are feeling, but you will weather this storm, and this storm will pass.

All of my very best wishes for a happy and healthy 2014.

Emma x
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Got the Call!

Post by jooles »

Thanks Emma and Suz

Wise words form you both. Suz, you sound like you've really been through it! Let's hope that 2014 is a really really good one for us all. My PD nurses and TX xo-ordinator seem to think that The Call will happen again soon - (their way may be of giving me hope!)

Best wishes to you both

Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
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