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Clairexxx
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« on: July 15, 2016, 02:21:07 AM »

Hello all you lovely people's, my name is Claire I'm 39 years old from Yorkshire and although new here, I'm very much not new to the world of dialysis and kidney failure.
Where to start, I was diagnosed with kidney failure at the age of 12 and it explained so much, like why I'm such a short arse. After much hormone treatments I am at the dizzy height of 4ft 10 n half inches tall (yes that half inch is very important!)
I'm a home heamo-dialysis patient and have been for the last 22 years, i do it all myself but my mum kindly helps me connect up and disconnect from as I call it.... Being tied to the bed!
I did do Peritoneal dialysis for a year but it didn't go well for me, I've got all the usual problems from bone disease to parathyroid issues even though years ago they were partly removed. But the main reason I'm here is to make new friends, who like me have all the needling and fluid issues, high n low bp and all the craziness that comes with living life on a machine... My machine is called Basil as in Basil fawlty! This is my fourth machine in all... I must wear them out.
For the last 8 years I have been the most blessed mummy in the whole world with my beautifully amazing little boy Mr Joe who I cared for full time and who made me realise he's the reason I'm here in this mad world. xxx
Sadly my brave special little boy passed away last year and I am now struggling to see a point in anything without my gorgeous little sprout, so blessed to have my little boy in my life but since he's passed away I struggle and feel the heartbreak of having the most amazing cheekiest little angel in all heaven every day.
Here is his story if you'd like to know how very blessed I am to be this brave gorgeously handsome young mans mummy x

http://www.bluebellwood.org/our-stories/mr-joes-story/

Anyway I've rambled on long enough so I will close there, but I'm happy to answer any questions anyone has x
Thanku for reading my introduction x
Claire xx
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: July 15, 2016, 03:02:19 AM »

Welcome to the site Claire

   :welcomesign;


And I'm very sorry for your loss of little Joe

Love, Cas

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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #2 on: July 15, 2016, 04:52:45 AM »

Welcome, Claire. I can see where Mr. Joe got his cheekiness.  I too am very sorry that your time together was so short. I hope we can offer you the support you need. K&S
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #3 on: July 15, 2016, 02:32:15 PM »


Oh Claire, as a Parent I cannot even imagine your grief of losing your Child.   Heart rending.   You will learn I often cannot shut up, and run on and on.  But your pain has me cut to the core.   I am so sorry for your loss.

Generally I am very welcoming to new members.  I am stuck at a loss for words right now.

Take Care,

Charlie B53
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Clairexxx
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« Reply #4 on: July 15, 2016, 02:49:59 PM »

Thank you for your lovely welcomes x
I'm really sorry if I made it arkward, My gorgeous little man runs through me so to know me, is to know him, it would never have been long enough time with such a brave cheeky little mr like him but I think by being together every single day of his life as he obviously wasn't well enough for school I crammed 40 years of being that annoying over loving mummy thing into 8 years and I don't regret anything I am so very blessed.
It just hurts so much, but when I don't want to stick the needles in I think all of what he went through every single day kick myself up the arse after all he never gave up.
I look forward to getting to know you all and Thanku again for your lovely friendly welcomes x
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DayaraLee
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« Reply #5 on: July 15, 2016, 04:34:43 PM »

Claire, like everyone else, I'm humbled by your story and amazed at your resilience. Mr. Joe's story brought both tears to my eyes and a smile to my face.   :welcomesign;
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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
SooMK
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« Reply #6 on: July 16, 2016, 05:23:11 AM »

Welcome Claire! Such a terrible loss for you and yet your strength and love show how lucky Mr Joe was to have you for a Mom. And his example is able to inspire you now. Thank you for sharing your story.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Clairexxx
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« Reply #7 on: July 19, 2016, 12:48:35 AM »

Thankyou for your lovely welcomes x means a lot x
mad as I am I've just signed up to do a firewalk in memory of my gorgeous mr for the hospice
(I'll be a puddle of Claire!)
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gilders
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« Reply #8 on: July 20, 2016, 01:13:39 AM »

Welcome Claire. I'm also from Yorkshire  (39 next month). So sorry to hear that your time with Mr Joe was too short.
I am very close to starting dialysis or transplant and reading how you have been on dialysis for many years and managed to care for your son with his extra needs, is inspiring especially when I read various life expectancy stats and know how tired I always feel.
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