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Author Topic: Husband 45 with no dialysis for 6 days-says he's quitting  (Read 98828 times)
brenda seal
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« Reply #50 on: August 04, 2012, 07:41:28 AM »

How horrible you both went through such a day ! Maybe if someone had shown him a little compassion and understanding , they could have talked him round . He obviously is at a point that he is not thinking clearly . Laurie once walked out of our local hospital after a nurse stood toe to toe arguing with him about pain meds he has been taking for over 30 years . She told him he could not leave with the iv  in , he said watch me ! She actually sent the police to our house to bring him back as he still had an iv in . He had in the meantime removed it himself . I know what you mean about strong willed and stubborn . I just wish this was not happening and I continue to send you both my best wishes . I hope you have lots of support .
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amanda58
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« Reply #51 on: August 04, 2012, 08:59:00 AM »

Hi John's wife...I understand how he feels, it is not easy to deal with being sick all the time. You do feel like you are a burden on everyone. My grandma lasted for over 3 weeks, and she had just had enough. She had no quality of life, and was not a good sick person. The family just supported her as best they could, and respected her wishes, after all, it was HER life. We just kept reminding her of all the good times we had had with her over the years, and even showed her some pictures of the best times throughout her life. Technology has progressed so much in the last 20 years, and we are able to sustain life so much further than when she passed, but the desire to live is a big factor on how well a person can tolerate the treatment. Some people just feel so lousy that they can't imagine getting any worse. Some people just keep up a brave face, and just carry on. The Lord will take him when the time is right, and really all you can do is love him and offer words of comfort.....tell him all the things he needs to know....be there . God Bless you
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boswife
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us and fam easter 2013

« Reply #52 on: August 04, 2012, 10:20:08 AM »

 :grouphug;  I wish you strength and peace, and Gods arms around you... blessings
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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
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« Reply #53 on: August 04, 2012, 10:53:49 AM »

 :grouphug; What a difficult time, he should be listened to. It's his life.
Big hugs for you johnswife!  :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
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My two beautifull granddaughters

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« Reply #54 on: August 04, 2012, 11:35:39 AM »

So many hugs coming your way.

 :grouphug; :grouphug; :grouphug;

I'm sorry that the medical staff put John through all that. Why won't they just listen to the patient?  :banghead;

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. :)
Desert Dancer
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« Reply #55 on: August 04, 2012, 12:50:45 PM »

johnswife, I'm sorry you had to deal with self-important jerks who felt they knew better than you and John. You two are going through such a difficult time already and certainly didn't need that kind of disrespectful idiocy on top of everything else.  :Kit n Stik;

I wish you weren't in this position to begin with. I really admire your commitment to John's wishes and I wish there were something I could do to ease your pain. Just know that there are many more people than you realize sending strength and healing thoughts your way.  :grouphug;
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
AnnieB
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« Reply #56 on: August 04, 2012, 01:28:45 PM »

 You are in my prayers.

:grouphug;
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amanda100wilson
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« Reply #57 on: August 04, 2012, 03:57:34 PM »

You were right and they were wrong, plain and simple.  At the moment, you need to put all your energy in to supporting your family.  When you are in a position to do so, I would love you to do something to redressed the wrong that was done to you and John today.  Complain for sure, butmore importantly, Ithink that you should go to the hospital (I hope it's a teaching hospital, if so, so much the better) or go to this one plus the nearest teaching hospital,not for retribution (bu for that as well if needs be) but to arrange a teaching seminar, where you can  tell John's story and his treatment today and use it as a way to raise discussion why this was wrong in so many ways.  Hopefully, some new docs. Will walk away having learnt avaluable lesson, and with a bit of luck, some older ones will too.  The doctors responsible for this treatment should simply hang their head in shame.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
bleija
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« Reply #58 on: August 04, 2012, 04:04:35 PM »

when u said they were gonna do surgery, i wondered why, i mean he has made his decision, he hass accepted what it means and you guys are supporting his wishes, to try to make him dialize i rediculous. what a crazy rediculous day
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MaryJoe
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« Reply #59 on: August 04, 2012, 04:35:41 PM »

Lisa, I'm keeping you and your family in my thoughts and prayers.  i know this is very hard for all of you, and I admire your ability to support your husband and take care of your children through all the stress and pain.  I'm glad John is not in any pain.
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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.
johnswife
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« Reply #60 on: August 07, 2012, 05:17:53 AM »

Hello to everyone. Just an update John is still here and actually still feeling ok. He's tired ect but it's been almost 3 weeks which the doctors didn't think could be done. Here's wishing for yet another day!
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Brightsky69
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« Reply #61 on: August 07, 2012, 07:23:48 AM »

 :cuddle;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
jbeany
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« Reply #62 on: August 07, 2012, 10:43:04 AM »

 :grouphug;  Sending good thoughts to you both.
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« Reply #63 on: August 07, 2012, 10:58:10 AM »

Hugz hang in there. 
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1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
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« Reply #64 on: August 07, 2012, 02:08:32 PM »

 :cuddle;
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okarol
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« Reply #65 on: August 07, 2012, 02:30:42 PM »

Hello to everyone. Just an update John is still here and actually still feeling ok. He's tired ect but it's been almost 3 weeks which the doctors didn't think could be done. Here's wishing for yet another day!

 :grouphug; :grouphug; :grouphug;
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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
boswife
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us and fam easter 2013

« Reply #66 on: August 07, 2012, 03:09:21 PM »

 :cuddle;  Thanks for contact and bless ya both,
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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
MaryJoe
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« Reply #67 on: August 07, 2012, 03:54:24 PM »

Lisa, Thank you for keeping in touch.  I'm glad to hear that John is still feeling O.K.  Praying for physical comfort for John, spiritual comfort and peace of mind for all of you and of course "yet another day".   :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.
Marsh
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« Reply #68 on: August 07, 2012, 06:07:07 PM »

Hugs!   :grouphug;
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joval
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« Reply #69 on: August 07, 2012, 06:32:49 PM »

May God Bless you as you go through this difficult time.......
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Karl Hand
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« Reply #70 on: August 08, 2012, 12:22:27 PM »

     Sounds to me like your husband has been dealt a bad hand.  I was only on dialysis for about 6 months.  It was killing me.  I did work out occasionally with weights.  One day I went to dialysis and someone was being prepped for a transplant.  Went home and told my brother that I thought I was next.  Just about got to sleep and my brother was pounding on my door.  When I angrily asked what he wanted, he told me my number was up.  Seems the guy that was to get the transplant chickened out.  The kidney was mine if I wanted it.  It was a cadaver kidney and I am pretty certain they said it had a 50/50 chance of taking.  That was 32 years ago.  Sometimes you just don't know and that is why it is important that you don't give up. 
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okarol
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« Reply #71 on: August 08, 2012, 09:14:13 PM »

     Sounds to me like your husband has been dealt a bad hand.  I was only on dialysis for about 6 months.  It was killing me.  I did work out occasionally with weights.  One day I went to dialysis and someone was being prepped for a transplant.  Went home and told my brother that I thought I was next.  Just about got to sleep and my brother was pounding on my door.  When I angrily asked what he wanted, he told me my number was up.  Seems the guy that was to get the transplant chickened out.  The kidney was mine if I wanted it.  It was a cadaver kidney and I am pretty certain they said it had a 50/50 chance of taking.  That was 32 years ago.  Sometimes you just don't know and that is why it is important that you don't give up.

Awesome story!
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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
johnswife
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« Reply #72 on: August 09, 2012, 10:10:58 AM »

Johns sure hanging on for something; I know that. He shouldn't be here-it's been 23 days with no dialysis and he's still fighting. I think he's staying around to tell the doctors kiss my a$$.  They told him with his function he
Wouldn't make it past 1-2 weeks!!

Something very ironic though-he's tried to get disability and was turned down well he got approved now starting september 1st!! What's the odds. It's like a cruel joke.
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Wat76
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This Too Shall Pass

« Reply #73 on: August 09, 2012, 10:39:03 AM »

Or......Maybe a blessing instead of a cruel joke. Wishing you both well, it is hard. I m  struggling with D. hopefully things will get better soon.
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PKD: PD started in February 2011.
Live, Laugh and Love daily.
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #74 on: August 09, 2012, 12:43:24 PM »

What about his infections?  Is he on antibiotics?  The chest catheter sounds painful.  It also sounds like they agreed to remove his catheters as a ruse, to get him in the hospital and bully him back onto dialysis.  Of course, it must be frustrating to think you can help a sick person and they refuse your help.  They are trained to keep people alive, seemingly at any cost, and to a hammer, everything is a nail...oh, hugs, I am glad he's not in pain!
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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