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Author Topic: Husband 45 with no dialysis for 6 days-says he's quitting  (Read 98824 times)
Lillupie
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wedding 12-10-11

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« Reply #175 on: September 14, 2012, 09:18:47 AM »
We havent heard from you since the 6th. How is John and you doing?

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
The Lady
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« Reply #176 on: September 14, 2012, 10:41:07 PM »
Definitely getting concerned here, especially since both of you were not feeling that great. Update soon, please!
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Hazmat35
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« Reply #177 on: September 17, 2012, 06:05:33 AM »
OH MY!  It's been a week and a half since last reply.  Anybody heard from JOHNSWIFE?????
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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!!!!  :)
willowtreewren
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My two beautifull granddaughters

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« Reply #178 on: September 17, 2012, 06:17:46 AM »
I can't help but be worried.

 :grouphug;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Jean
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« Reply #179 on: September 18, 2012, 12:19:14 AM »
Me too. This does not look any too good.
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One day at a time, thats all I can do.
lmunchkin
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"There Is No Place Like Home!"
« Reply #180 on: September 18, 2012, 05:49:37 PM »
You both are in our prayers, Johnswife.  Let us know! We are here for you!

lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
MommyChick
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Me & my precious Miracle !!!
« Reply #181 on: September 19, 2012, 04:44:13 PM »
Been thinking of your family, your in my thoughts & prayers  :grouphug;
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
johnswife
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« Reply #182 on: September 20, 2012, 08:50:42 AM »
Hello dialysis family. I'm happy to say John is still with us at about 9 weeks. Doctors cannot believe it!! He's weak, has fallen a couple times, he is still throwing up everyday, can't eat without diahrea following within minutes. Hes been freezing past couple of days so he been staying under alot of covers unless the wa sun come out and then he loves to sit out in it. He's not in any pain other than his back is sore from that fall. He does get very anxious though very easily and takes Xanax. That's the only med he is on period. He did say yesterday he can tell it won't be long; he said his heart just feels weak and worn out. He's had a few pretty bad headaches as well over last 2 days. Overall though he feels ok.

Thank you all for the prayers and kind words;)
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okarol
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« Reply #183 on: September 20, 2012, 10:57:11 AM »
Wow - so glad to hear from you.
How are YOU doing?
 :cuddle; :cuddle; :cuddle;
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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
willowtreewren
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My two beautifull granddaughters

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« Reply #184 on: September 20, 2012, 03:58:16 PM »
John is so amazing.

And yes, how are YOU?  :grouphug;

My thoughts turn to you every day.  :cuddle;

Envelope yourself in warm loving thoughts.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
jeannea
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« Reply #185 on: September 20, 2012, 07:33:25 PM »
I'm sure your heart aches to watch this. I can tell your love for him. Please take care of yourself as well.
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Jean
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« Reply #186 on: September 22, 2012, 12:31:06 AM »
These are really hard times for you. You are a wonderful wife and caregiver, please stay in touch with us. Wow, 9 weeks. He is tough!!
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One day at a time, thats all I can do.
Poppylicious
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« Reply #187 on: September 22, 2012, 06:13:12 AM »
He is very tough.  I hope you're managing to take care of YOU as well. *huggles*
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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.
frankswife
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« Reply #188 on: September 22, 2012, 06:58:14 AM »
WOW. Thats the only thing I can manage to say.  :grouphug; and  :pray; for you both.
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"If we all abandon our posts, who then will stand?" St. Augustine
billybags
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« Reply #189 on: September 22, 2012, 07:14:41 AM »
johnswife, Thanks for letting us know. Our thoughts and prayers are with you. You are two very brave people.
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boswife
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us and fam easter 2013
« Reply #190 on: September 22, 2012, 11:34:47 AM »
blessings and prayers and  :grouphug;  I can only pray that you all get the comfort and peace you need.  with love  :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Hazmat35
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« Reply #191 on: September 24, 2012, 05:57:56 AM »
 :grouphug;  :grouphug;  :grouphug;

God Bless you and your entire family.  What a strong woman you are. 
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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!!!!  :)
MaryJoe
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« Reply #192 on: September 24, 2012, 10:56:55 AM »
Thank you for taking the time to let us know John and you are doing.  I know this is a very hard time for you and I am amazed at your strength -- and John's.  I hope he gets some relief from the headaches, vomiting and diarrhea, it would be nice if you both could have a little peace through all this.     :grouphug;
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
natnnnat
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« Reply #193 on: September 24, 2012, 06:08:14 PM »
Hoping for comfort for you and John.   :cuddle;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #194 on: September 24, 2012, 10:32:51 PM »
 :waving; Hi - thinking of you guys.
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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
Joe
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« Reply #195 on: September 25, 2012, 05:42:38 AM »
Just wanted to add that I'm thinking of you guys too.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
johnswife
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« Reply #196 on: September 26, 2012, 08:55:06 AM »
Just a quick update--johns still with us and feeling a little better but his site where his pd catheter is looks very bad. It had some blood around it yesterday, looks very puffy and like its getting an infection. He refuses to go back to the hospital to try again and have his 2 catheters removed. If you remember the lady time he went to get them out they admitted him and tried to force dialysis--he left AMA and so for 9 weeks he's had the tubes chest catheter and pd catheter in him and not being used. I'm worried this infection will turn out bad but he just says I'm going a slow painful way now and maybe this will speed it up. He's truly miserable at this point. Itching is really getting bad to the point he's scratching sores on his legs.

His back is still very very sore from that bad fall as well; I'm positive he broke something but he just refuses to do anything but wait on death. Very sad.
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Joe
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« Reply #197 on: September 26, 2012, 09:06:05 AM »
This is such a tough road for you to travel. Do make sure you are taking care of yourself.

John's itching is likely due to his potassium levels getting all wonky. I have that problem when I stray from what I'm supposed to do  ::) 

Just know we are thinking of you.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
willowtreewren
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My two beautifull granddaughters

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« Reply #198 on: September 26, 2012, 09:25:08 AM »
Did you get Hospice involved? They can ease his pain as he waits out his last days, and they will be a help to you!

Loving thoughts are flowing your way.

 :grouphug; :grouphug;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
cdwbrooklyn
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« Reply #199 on: September 26, 2012, 10:52:54 AM »
Greeting Johnwife,

Do you think it’s too late to get him some mental help?  Maybe a therapist can come to your house and talk to him.  It sounds like he is off balance and off reality with life.   Can you call a therapist and ask him or her for a home visit? 
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
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