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Des
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« Reply #25 on: July 21, 2010, 02:31:39 AM »

Hubby says that I must add:

When the phone rings while she is at the dialysis centre your heart skips a beat.
You listen to any noise she makes while sleeping... to make sure that she's ok.
You know when you fetch her from Dialysis that you must park close to the entrance in case she feels tired.
You stop eating salt to make it easier for her to cook.

 
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #26 on: July 21, 2010, 11:12:12 AM »

Hubby says that I must add:

When the phone rings while she is at the dialysis centre your heart skips a beat.
You listen to any noise she makes while sleeping... to make sure that she's ok.
You know when you fetch her from Dialysis that you must park close to the entrance in case she feels tired.
You stop eating salt to make it easier for her to cook.

:2thumbsup; Nice hubby!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
renalwife
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« Reply #27 on: July 31, 2010, 07:05:52 PM »

 :Kit n Stik;
When you give your brother the prize you won at the Riverside meet to your brother.  You know, Paris, the purple throw with the monogram "i hate dialysis" on it that you made, and the purple carrier that came with it.
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renalwife
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« Reply #28 on: July 31, 2010, 07:09:38 PM »

 :stressed;

I forgot to add that Bob, my baby  brother is on dialysis . He does not have a computer. 
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rocker
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« Reply #29 on: August 01, 2010, 12:31:31 PM »

Your heart pounds for a moment because some sound effect on the TV sounded just like one of the many medical machine alarms you know by heart.
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gothiclovemonkey
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« Reply #30 on: August 02, 2010, 09:39:40 AM »

This fits the discussion, but not in the style of "You know u love a kidney patient when..."
My son at age 3 could say Dialysis....
Asks me, "Mommy how was dialysis today?"
Now, at age 6, "Mommy do u need help?" Hes such a big helper, and very understanding of me being on pd now.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
galvo
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« Reply #31 on: August 02, 2010, 09:31:07 PM »

Sounds like a great boy.
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Galvo
gothiclovemonkey
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« Reply #32 on: August 03, 2010, 07:13:22 AM »

He amazes me daily. He was a premie, I had him at 26 weeks he was 1lb 6oz 11 3/4 inches! Hes a huge helper, and he keeps me going, I couldnt have asked for a better child. He has adhd, and cp, so we have our moments where im pulling my hair out lol But he makes everything i go thru on dialyis worth it.
sorry that was totally off topic :)
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
-Lady Noir-
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Where's your will to be weird?

« Reply #33 on: August 07, 2010, 05:00:47 PM »

This fits the discussion, but not in the style of "You know u love a kidney patient when..."
My son at age 3 could say Dialysis....
Asks me, "Mommy how was dialysis today?"
Now, at age 6, "Mommy do u need help?" Hes such a big helper, and very understanding of me being on pd now.

That is very sweet :)
My daughter was 3 when Mike started dialysis & she used to say "Daddys diaylsis is good because the sugar that goes into his belly takes away all the yucky stuff cause his kidneys don't work"  :lol;
Now she's nearly 5, shes pretty onto it when it comes to everything dialysis related :)
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
gothiclovemonkey
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« Reply #34 on: August 09, 2010, 09:26:02 AM »

awww so cute! children can be so awesome sometimes
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
VictoriaG
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always happy <3

« Reply #35 on: August 09, 2010, 12:36:05 PM »

... your potassium is low.

... you marry them 7 months after diagnosis.

... you shovel 2 feet of snow yourself because they just had the fistula operation and you have to get the car out because YOU'VE decided they can't miss dialysis today.

... you drop the kid off at grandmas and go sit with them happily for 4 hours and laugh together when you have to walk around because your legs are cramping after one hour. "now try not moving your arm ha ha ha"

... you do a little dance when you discover a dialysis friendly meal the whole family loves.

... you wash their hair in the sink for four months.

... you pray you can be a donor. even when your mother is praying you can't! lol

... when your life is nothing like you thought it would be and you couldn't be happier.
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-Lady Noir-
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Where's your will to be weird?

« Reply #36 on: August 09, 2010, 02:20:54 PM »

... you pray you can be a donor. even when your mother is praying you can't! lol

... when your life is nothing like you thought it would be and you couldn't be happier.


 :clap;
So, so true!!
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
greco02
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« Reply #37 on: September 14, 2010, 12:03:14 PM »

I don't think I can top the pillow comment.   However:

You stick by him even though this predinsone dosage makes you think otherwise.   :sir ken;
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Hazmat35
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« Reply #38 on: September 23, 2010, 05:00:54 AM »

You don't even know how to cook with salt

You stare at their ankles discretely to see if they are underdialyzed

You worry about their fistula when they cut their hand

You jump out of bed when you hear beep beep

You pretend not to notice when they just have to have fries and a shake

You secretly wonder if they have taken their meds, and check the bottles when they are in the shower.

You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.

You secretly study everything you can about their disease, but you act dumb when they explain something to you.

You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.

So true Meinuk, the last one made me cry!  That is exactly how my G/F feels.
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Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Diagnosed w/ A-Fib October 2017
Surgery to repair Hiatal Hernia 2018
Multiple Fistula Grams / Angioplasty's since then!


Hating Dialysis since Day 1 and everyday since then!!!!  :)
Mizar
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« Reply #39 on: September 23, 2010, 04:11:07 PM »

 You get up at 5:30 a.m. and Brush Your Hair and put on Clean Clothes, to Drive them to Dialysis a Mile Away - because, the Morning, I went in my Ragged P.Js ,
 was the Morning, I had to go inside and Ask for a Wheelchair!
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okarol
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« Reply #40 on: September 23, 2010, 04:15:36 PM »

When in the dark of night you can reach out to that tabletop LOADED with various medications and without a problem pick out the nausea or cramp med to give her. And spend hours re-arranging them after the visiting Nurse or Doctor goes through them and never places them back in the correct "position".........

How about the confusion you feel for a couple of weeks when you hand her her morning or evening meds and things do not look quite right because the pharmacy has changed suppliers of a certain med and the pill is a different shape or color, you just know something isn't right........

 :cuddle;
You know you love a dialysis patient when you accept their decision to stop the fight, when you really want them to stay with you.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cariad
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What's past is prologue

« Reply #41 on: September 23, 2010, 08:06:01 PM »

I found this one last night - a paragraph my son wrote in class last May (end of grade 2, age 7). I am leaving the spelling and other errors uncorrected:

If I was a organ, my job would be to fight the germs and clean the blod. What organ is that you ask? Well that is a kidney.

I can just picture the teacher reading this, knowing what he knew. Not sure where Aidan got the idea that kidneys fight germs. I suppose because I had to wear a mask and be obsessively careful right after the transplant. Anyhow, I got a sense of what was on his mind last spring. Such a sweet, gorgeous boy.
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MooseMom
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« Reply #42 on: September 23, 2010, 08:26:30 PM »

Cariad, awwwwwwwww!
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gothiclovemonkey
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« Reply #43 on: September 24, 2010, 04:21:47 AM »

awww cariad that is soo sweet.
Sounds like we both have some good boys on our hands :) Isnt it a wonderful thing? Makes all this worth it.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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LISTED ACTIVE! 11/14/11 !!!
aharris2
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Volcan Pacaya, Guatemala

« Reply #44 on: September 24, 2010, 01:49:52 PM »

When in the dark of night you can reach out to that tabletop LOADED with various medications and without a problem pick out the nausea or cramp med to give her. And spend hours re-arranging them after the visiting Nurse or Doctor goes through them and never places them back in the correct "position".........

How about the confusion you feel for a couple of weeks when you hand her her morning or evening meds and things do not look quite right because the pharmacy has changed suppliers of a certain med and the pill is a different shape or color, you just know something isn't right........

 :cuddle;
You know you love a dialysis patient when you accept their decision to stop the fight, when you really want them to stay with you.
:'(
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
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Yvonne

« Reply #45 on: September 25, 2010, 04:16:26 AM »

Sorry to add this:- You do not realise how much you loved them until it is too late and can do nothing about it.
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
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« Reply #46 on: September 25, 2010, 05:25:36 AM »

This is the best conversation I've listened to in a long, long while. So very human and uplifting. Thank you everyone.
But you left one out...when your dreams each night start to include a dialysis machine and you're OK about it.
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MomInDialysis
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« Reply #47 on: April 01, 2011, 03:28:13 PM »

You don't even know how to cook with salt

You stare at their ankles discretely to see if they are underdialyzed

You worry about their fistula when they cut their hand

You jump out of bed when you hear beep beep

You pretend not to notice when they just have to have fries and a shake

You secretly wonder if they have taken their meds, and check the bottles when they are in the shower.

You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.

You secretly study everything you can about their disease, but you act dumb when they explain something to you.

You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.
  Oh the nail you tapped in my heart with these lines...My heart jumped and my tears began to flow...Thank you for stating my thoughts so clearly
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Poppylicious
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« Reply #48 on: April 14, 2011, 08:07:48 AM »

But you left one out...when your dreams each night start to include a dialysis machine and you're OK about it.
Last night I dreamt that Blokey got 'The Call'.  It was really vivid and I completely and utterly believed that it was happening.  Then Blokey came to bed, and despite being more asleep than awake I remember the immense feeling of disappointment as I realised that it wasn't true.  I think I may have told him that he got 'The Call' ... I'll have to ask him when he gets home from work.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
TexanSummer
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« Reply #49 on: April 16, 2011, 06:04:08 PM »

you don't want him to have to do anything on dialysis days & you gladly get him anything he needs.....even after a long day of work

your 6 y/o little girl is excited about Mondays, Wednesdays, & Fridays because those are the days Daddy goes to dialysis

your coworkers can come to you with kidney questions...even if they are "nothing" you don't mind listening & telling them your opinion (I stress OPINION to them & remind them that I am NOT a doctor)

you are on this site & with in the first few weeks of diagnosis & registering with IHD, you have read almost EVERY SINGLE THREAD COMPLETELY

you know more about dialysis, kidney issues, side affects, etc than he does 

you follow the same diet because you don't want to upset him by eating the foods he loves in front of him, knowing he can't have them.....(I miss you chocolate! LOL)
« Last Edit: April 16, 2011, 09:22:48 PM by TexanSummer » Logged

Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
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