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Author Topic: Mourning the loss of my NxStage  (Read 15555 times)
David13
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A meow massages the heart.

« Reply #25 on: February 18, 2009, 04:45:43 PM »

Have you asked nursing students in the area?

Great idea, Kit! 
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okarol
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« Reply #26 on: February 18, 2009, 04:47:23 PM »


A guy found a kidney on Craigslist (see News Articles) so maybe you could find someone to help...? Ya never know.
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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
jbeany
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« Reply #27 on: February 22, 2009, 04:49:29 PM »

Auugh!  I got the keys to the house today.  Now I know why she was so eager to have someone move in.  When she left for the winter, which is turning out to be a permanent vacation in Arizona, she didn't pack or move much of anything.  She's had the house on the market for a year, so I figured if would be nearly empty.  Nope!  It looks like she just walked out the door and left it.  The closets are overflowing, the cupboards are stuffed full, the knickknacks are still all over, and even the fridge is still partly full. (Ewwwww!) There were still dishes in the sink.  No wonder she couldn't sell it!  I've got to pack her stuff and put it in storage before I can move in mine.  I know part of her problem was it's half my dad's stuff, and she couldn't deal with it after he died.  Hopefully, it will be easier for her if I have it already boxed up and labeled. 

At any rate, my packing just doubled.  I've already come to the conclusion that I own tooooooooooo much junk, just from boxing up the first of my things here at home!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

okarol
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« Reply #28 on: February 22, 2009, 07:49:44 PM »


Awww JB - that sucks. Sounds like a lot of work. Does she mind if you sell her stuff? Or just don't tell her LOL.
Hope things get easier soon. xoxoxo
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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
kitkatz
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« Reply #29 on: February 24, 2009, 03:21:26 PM »

Good luck with two houses full of junk!  :grouphug;
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Remember your present situation is not your final destination.

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paddbear0000
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« Reply #30 on: February 24, 2009, 06:24:54 PM »

I'm very sorry to hear about all of this. it's great to have a house to use, but it sucks that you have to deal with all of the mess!  :cuddle;
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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Rob showing off his pot of gold!

« Reply #31 on: February 27, 2009, 05:45:47 AM »

I'm sorry about not being able to do NxStage, you were doing great on it.  I'll pray that something comes up for you.  In the meantime, enjoy the house!
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
jbeany
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« Reply #32 on: February 27, 2009, 03:10:04 PM »

I had my first day in-center, at the center closest to the new house.  It's a satellite center from my other clinic, so I get the same doc, dietitian, and social worker.  It's tiny!  3 chairs in a room smaller than my new living room.  Only 2 staff members at a time.  There's some advantage there, though - no waiting for hook-ups, fewer people to spread cold germs, and it's really quiet.  Good crew, too.  I, of course, got to start out my first day back in the grind by shoveling out from 12 inches of snow that we got last night.  I'm a 15 minute drive from the center, and it took me over an hour to get there - most of that time spent just trying to get a car out of the driveway.  When I got there, the only nurse there introduced himself as Dave, and said the other nurse, Nancy would be there shortly.  One of the 3 patients lived a few miles away, and was stuck, so Nancy had taken Dave's truck to go get her.  Now that's personal service!

On the down side - I'm right back to that washed-out, crappy feeling I always got after in-center, and the weird taste is back in my mouth.  Ugggh.  On to my first weekend off D in ages, too.  Time to freeze some grapes and try to stay away from the faucet.

On the up side, my step-mother tells me that the pond in my new front yard has its very own otter.  That should be fun!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

paddbear0000
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« Reply #33 on: February 27, 2009, 08:07:00 PM »

An otter? How cool!
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
jbeany
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« Reply #34 on: March 03, 2009, 12:23:19 PM »

@#$#@%%$&*@

Packing! 

Someone shoot me now, please.  Or give me a kidney, damn it!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Zach
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« Reply #35 on: March 03, 2009, 12:54:03 PM »


 Or give me a kidney, damn it!


I'll give you one of mine!   :o
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
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jbeany
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« Reply #36 on: March 03, 2009, 05:13:51 PM »

Ya think if we traded, they'd decide to start working again?  Give them a change of scenery, maybe that would inspire them to function?

4 hours of non-stop packing at the new house to get step-mom's stuff boxed and out, and it doesn't even look like we've made a dent in it.  I came home exhausted, but the only reason we stopped is we ran out of boxes.  Ah, well, my nap has me in a better mood, but I'm still sick of packing!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Wattle
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« Reply #37 on: March 03, 2009, 06:59:13 PM »

AN OTTER JB!!  I really want a pic of that!!

I am sorry you had to shovel snow before you could get out of the driveway. That sounds foreign to me!

I hope you get to swap back to nxstage soon.  :cuddle;
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jbeany
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« Reply #38 on: March 04, 2009, 11:32:41 AM »

Turn, turn, turn.. . .
Step-mom called me today.  Now she's coming back and I can't use the house.  I was expecting her to flake out not long after I was in it, but not quite this soon!  Apparently, the buyer she had for the family restaurant backed out, so now she has to come back to run it.  Hmmmm. . . better her than me; that place is exhausting.

At any rate, my packing continues, and I'm going to apply to a rent controlled apartment only about 6 miles from the center I'm at now.  If that doesn't work, I can stay where I'm at at least until summer - it's still only about a 15 minute drive.  I've got lots of time to sort and get rid of my junk!

Thankfully, I've only moved a single carload of stuff to the new place.  Step-mom has just doubled her work, though.  We packed all her stuff and moved it out to the garage already!

I really did want to see the otter, though!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

okarol
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« Reply #39 on: March 04, 2009, 11:40:11 AM »


It must be so frustrating to have things so unpredictable now - I pray it just means that simpler times are ahead.
 :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
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #40 on: March 04, 2009, 07:56:44 PM »

Oh man jbeany, that SUCKS! I would be so pissed at her!!   :cuddle;
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #41 on: March 05, 2009, 01:21:55 AM »

She better not be one bit angry that you packed stuff up and put it into the garage and cleaned up the mess in the kitchen. I wouldn't put a thing back. This is where being on dialysis comes in handy for once, which is very rare.
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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?
Joe Paul
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« Reply #42 on: March 05, 2009, 01:44:32 AM »

So nice of you to start to clean things up, then she tell you she is coming back. I hope you soon get your own place, close to your clinic. It would have been nice for you to find another partner though, so you could have continued with your nxstage. You are in my thoughts and prayers.
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paris
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« Reply #43 on: March 05, 2009, 02:24:08 PM »

I am sorry Jbeany.  All that work for nothing.  If she is upset with her stuff packed up, give her my phone number!   I'll take her on!   I hope a good solution comes soon.   :cuddle;
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kitkatz
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« Reply #44 on: March 06, 2009, 05:06:33 PM »

That is too bad things did not work out.  She got a clean house, though and all you got was screwed.  Hope things pick up better for you soon!
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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
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« Reply #45 on: March 09, 2009, 11:11:56 AM »

jbeany - where are you at in Michigan?  I see your profile says Northern Michigan - is that the U.P?  Or is it the northern part of the L.P?  I'm also a Michigander who does NxStage.  I live near Detroit, but my mother lives in Atlanta, MI (half hour from Gaylord). 
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jbeany
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« Reply #46 on: March 09, 2009, 02:54:21 PM »

cherpep, I'm right by the Bridge.  My center is in St. Ignace, at the north end of the Big Mac, but I'm below the Bridge with the rest of the trolls. . .

I called on the supposed "low-income" housing apartments in Mackinaw today.  The woman at the office said they were income-based, with the lowest possible rent at $400, plus electric.  What?  I only make $800 on disability - how can that be income-based if they want half of what I get?  Nuts.  The other income-based apartments in the other closest town takes your income, subtracts major expenses like medical costs, and then figures 30% of the remainder to get a rental fee.  Guess I have to go to the Housing Commission and see about getting on the waiting list for disabled housing now.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

pelagia
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« Reply #47 on: March 09, 2009, 06:09:11 PM »

 :grouphug; hope tomorrow brings something better.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #48 on: March 09, 2009, 08:33:33 PM »

cherpep, I'm right by the Bridge.  My center is in St. Ignace, at the north end of the Big Mac, but I'm below the Bridge with the rest of the trolls. . .

I called on the supposed "low-income" housing apartments in Mackinaw today.  The woman at the office said they were income-based, with the lowest possible rent at $400, plus electric.  What?  I only make $800 on disability - how can that be income-based if they want half of what I get?  Nuts.  The other income-based apartments in the other closest town takes your income, subtracts major expenses like medical costs, and then figures 30% of the remainder to get a rental fee.  Guess I have to go to the Housing Commission and see about getting on the waiting list for disabled housing now.

That's what I am afraid of happening if I try. And probably Medicaid would want more too for being on my own, but they already get a good chunk of my disability income. I haven't looked further into it yet, just been to the office that helps, which got me some more money from the state. Not sure if this is a one time check or a monthly check, but $79 bucks is good for gas  ;D Not ure if you have a county office that is called (your county) center for independent living. It is for people on disability and helps in various ways no matter what your disability is.
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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?
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #49 on: March 10, 2009, 01:31:09 PM »



I think this is a great idea - it's about PD but seems to make sense that it could be done for NxStage too.
http://ihatedialysis.com/forum/index.php?topic=12829.0
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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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