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Author Topic: Husband 45 with no dialysis for 6 days-says he's quitting  (Read 98851 times)
boswife
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us and fam easter 2013
« Reply #125 on: August 24, 2012, 09:27:25 PM »
I'm sending you some love and prayers.  God bless this time and make it easier on your family..  :grouphug;
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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
kitkatz
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« Reply #126 on: August 25, 2012, 07:08:29 PM »
 :grouphug; :grouphug; :grouphug;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
mikey07840
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Her royal highness Queen Ruth on her throne, RIP
« Reply #127 on: August 25, 2012, 10:20:48 PM »
 :grouphug; :grouphug; :grouphug;
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #128 on: August 25, 2012, 10:23:02 PM »
 :cuddle; Thinking of 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
Leanne
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« Reply #129 on: August 26, 2012, 01:28:28 PM »
  :grouphug;  hi Johnswife.  I just officially joined but have been coming here reading for a while and have kept up with this thread.  You have both been in myprayers and thoughts.  I understand where you are completely.  My younger brother passed in May after a long painful battle with MS.  He chose not to have any lifesaving measures if his life was in danger so when hegot an infection that went septic I chose to honor his wishes and he spent his last days on hospice.  I didn't want to lose him but that was what he wanted. There are no words to ease you but I do want you to know that I will keep thinking of youboth and praying for you.  Hoping God gives you strength to do what you must.  Hugs to you and thinking of you.....
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
johnswife
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« Reply #130 on: August 27, 2012, 04:07:04 PM »
Hi all! Johns still with us over 40 days---doctors don't know what to think. He's very sick though. He cannot eat without having immediate and I mean within minutes diahrea and if he doesn't eat he throws up horribly. So it sucks for him no matter what he does!! I can't even imagine. Last night he had sever back pain to the point he was about to pass out. I've finally gotten him to agree to hospice so going to call his doctor tomm. He's been asleep most of today but resting comfortable. I'm just resting and bracing for tonight;( he's much worse at night.
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Chris
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« Reply #131 on: August 27, 2012, 05:01:13 PM »
Glad to hear he agreed to hospice. I hope that helps you both.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Leanne
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« Reply #132 on: August 27, 2012, 07:13:05 PM »
I am glad you are calling hospice.  They helped me so much with my brother.  They were as worried about me as him and all were lovely caring people.  Still thinking of you both and praying for you... :cuddle;
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
Clara
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« Reply #133 on: August 27, 2012, 09:49:33 PM »
My prayers are with you.  My mother works hospice and they can really help.  I know she mentioned that it is not pleasant when you are going with renal failure but the nurses can help with meds to make him more comfortable.
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jessicalynn42
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« Reply #134 on: August 27, 2012, 11:34:49 PM »
hospice realy helped when my friend passed i held her hand for 3 days as she passed. They always made sure i was ok and brought me things to drink and kept me in better spirits as i watch my good friend pass. The messed up part is I know someday it will be my turn and i hope I have a friend like me in my last days.
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fistula installed 2010
incenter hemodialysis 2010
No catherder ever
Jean
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« Reply #135 on: August 28, 2012, 12:14:27 AM »
So glad he has agreed to have Hospice. They can help him be more comfortable and the volunteers can move mountains. Please take this time to get a little rest. So sorry for all you are going thru.   :pray; :pray;
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One day at a time, thats all I can do.
billybags
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« Reply #136 on: August 28, 2012, 08:13:41 AM »
My heart goes out to you both. He will be far better off in a hospice.  You are both in my prayers.
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Desert Dancer
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« Reply #137 on: August 28, 2012, 10:39:47 AM »
So glad he agreed to hospice, johnswife; I think it will really provide some needed relief. Just want you to know I'm sending all kinds of loving thoughts your way, and prayers for your continued strength.  :cuddle;
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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.
cassandra
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When all else fails run in circles, shout loudly
« Reply #138 on: August 28, 2012, 01:44:22 PM »
Thinking of you all, and glad John has agreed to hospice.

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
amanda100wilson
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« Reply #139 on: August 28, 2012, 03:57:02 PM »
I am so glad that he has agreed to hospice.  I believe that it will be better for both of you.  Amanda
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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...
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #140 on: August 28, 2012, 04:20:44 PM »
 :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
willowtreewren
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My two beautifull granddaughters

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« Reply #141 on: August 29, 2012, 10:13:36 AM »
I, too, am glad that John has agreed to let Hospice in to help, as much for your sake as his.

You have been on my thoughts....

 :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. :)
AnnieB
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« Reply #142 on: August 29, 2012, 05:13:27 PM »
 :cuddle; Hospice is a good choice. They'll be able to give you a break from caregiving and they know how to handle the kinds of difficulties that can come up at a time like now. You are both in my prayers.

 :flower;

Anne
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Leanne
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« Reply #143 on: August 30, 2012, 06:02:22 PM »
 :cuddle; Just thinking of you this evening, saying a little prayer that things are going ok. 
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #144 on: August 30, 2012, 11:12:57 PM »
Remembering you and John.  My caring thoughts and prayers are still with you all the way.
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
johnswife
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« Reply #145 on: September 02, 2012, 05:16:10 AM »
Well my John is still here and showing no signs of slowing down. He hasn't thrown up for 2 days and actually feeling pretty good. I def can't explain it nor can the doctors. He hasn't even needed pain meds for 2 days. He's a strong man for sure.
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #146 on: September 02, 2012, 06:54:51 AM »
Good news!  Enjoy this reprieve to the fullest.  My caring thoughts and prayers are still with you all  :grouphug;
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Rerun
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Going through life tied to a chair!
« Reply #147 on: September 02, 2012, 10:41:48 AM »
Wow.  That's amazing.

           :yahoo;
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boswife
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us and fam easter 2013
« Reply #148 on: September 02, 2012, 12:51:47 PM »
wow for sure!! It's kind of hard to know what to even say at this point but seems you have many prayers commen your way, and mine as well.  As long as all is somewhat peaceful these days, it's all blessed time.  I truly wish that his kidneys (and all other issues) would just have healed themseves and your on the road to a whole different story that you anticipated.  All the best,,, 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
willowtreewren
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My two beautifull granddaughters

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« Reply #149 on: September 02, 2012, 01:29:04 PM »
I'm glad that John has rallied. Did you get hospice in to help?

Sending you......    :grouphug;  :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. :)
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