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Author Topic: Mourning the loss of my NxStage  (Read 15331 times)
jbeany
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« on: February 16, 2009, 04:58:17 PM »
My dialysis partner took the only job he's been able to find in this lousy economy - long distance trucking.  My center won't support doing home dialysis without a partner, and there's no one else to do it with me, so in two weeks, I'm stuck back in-center. Even if I could badger my center into letting me try it solo, I already know my graft has scarred up so bad that I can't do my own sticks anymore.   So it's back to being constantly tired, thirsty, and broke from buying gas to get to the closest center an hour away.

This sucks.
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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.
vandie
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« Reply #1 on: February 16, 2009, 05:01:56 PM »
Oh JB, I am so sorry to hear this for you. 
xoxo
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« Reply #2 on: February 16, 2009, 05:07:05 PM »
Can't you find someone to come stick you?  You know there has got to be someone out there.  I'm so sorry JB!

                                     :(
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monrein
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« Reply #3 on: February 16, 2009, 05:45:02 PM »
jbeany, I'm so bummed for you.  Wish I lived closer, I'd be happy to stick you....well happy isn't the right word, more like willing.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
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(2 1/2 hours X 5 weekly)
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« Reply #4 on: February 16, 2009, 05:59:05 PM »
what a bummer JB, I'm hoping there is someone out there to help :cuddle;
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kitkatz
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« Reply #5 on: February 16, 2009, 06:06:06 PM »
That is not so good. 
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« Reply #6 on: February 16, 2009, 06:39:51 PM »
Oh, that does not sound good.  Is there any chance of doing nocturnal?  :grouphug;
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« Reply #7 on: February 16, 2009, 06:57:58 PM »
Oh, no, JB!  I feel so for you.  Isn't there anyone else close by (friend, relative, retired nurse, etc.) who can step in and take over the "caregiver/partner" for you so you can stay on home hemo while your husband is on the road?  Even if it's considered "temporary" until you can work something else out?  Can you put out a plea to churches to see if there's someone in the medical field who would volunteer to help you out some?

Marvin and I would be devastated if he had to give up home hemo, and I can imagine that's how you feel.  How close are you to the southeastern coast of NC?  If I could, I would "double up" and be your partner, too.
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jbeany
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« Reply #8 on: February 16, 2009, 07:03:32 PM »
I'm in Michigan, petey, but thanks for the offer. 

They don't offer nocturnal around here, or I'd try that.
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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.
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« Reply #9 on: February 16, 2009, 07:12:25 PM »
Sorry to here that JB. Wish there was another way.  :grouphug;
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Bill Peckham
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« Reply #10 on: February 16, 2009, 07:14:15 PM »
That sucks. A modern day Flowers for Algernon.

Are there any other dialyzors in your area? There is the Hana model.
« Last Edit: February 16, 2009, 07:18:17 PM by Bill Peckham » Logged
http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
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« Reply #11 on: February 16, 2009, 07:32:29 PM »
I am so sorry.  This stinks.  I wish there was an easy solution.   :cuddle;
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jbeany
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« Reply #12 on: February 16, 2009, 08:25:13 PM »
Quote from: Bill Peckham on February 16, 2009, 07:14:15 PM
That sucks. A modern day Flowers for Algernon.

Are there any other dialyzors in your area? There is the Hana model.

I don't think there's anyone else close enough who would be capable of exchanging treatments.  Most of the other home hemo patients went on it in part because the distance between centers around here, just like I did.

(That book gave me the creeps.)
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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.
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« Reply #13 on: February 16, 2009, 08:54:15 PM »
so sorry :'(
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Wattle
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« Reply #14 on: February 16, 2009, 09:33:07 PM »
 :cuddle;  Hugs JB I know how much you hate being incenter.

What about a family member/friend? District nursing service? I am surprised they are not trying harder to keep you home.
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PKD
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Dan.Larrabee
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« Reply #15 on: February 16, 2009, 09:52:02 PM »
Sorry JB, that really sucks! I don't know what I would do without my NxStage. If you can get past the sticks somehow, I have herd that some centers will approve to be home alone if you get a device like a Life Alert.
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« Reply #16 on: February 16, 2009, 10:35:14 PM »

I am so sorry JB, that's really bad news. I can't help but think that there must be someone willing to help you... I wish I could help. Is there no solution to this??
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« Reply #17 on: February 17, 2009, 01:24:52 AM »
Sorry to hear this JB, I wish there was a way you could continue  :grouphug;
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« Reply #18 on: February 17, 2009, 02:41:41 AM »
Sory to hear JB, that sucks donkey ****'s!
That is one of the drawbacks of being alone I fear, no help. Wish there was someone close to you from here that you know could help you.
I forgot, did you have the buttonholes for dialysis? If not and you had those, would they allow you to continue at home? Or are they clueless about buttonholes?
Wish I could help, but the daily commute would be a b**** with airline flight's and rental car cost.  ;D :urcrazy;

Hope incenter goes ok than the last.
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Diabetes -  age 7

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jbeany
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« Reply #19 on: February 17, 2009, 10:27:21 AM »
I have a graft, Chris - no buttonholes allowed.

I'm working on moving someplace closer to another center - my stepmother has offered to let me move into her place.  If that goes thru, at least my drive time would only be about 15 minutes, instead of an hour.
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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.
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« Reply #20 on: February 18, 2009, 03:28:45 AM »
I hope you like your step-mom JB. 15 min drive compared to n hour would be better, but if you don't get along to well, that hour may seem a piece of cake.
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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?
jbeany
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« Reply #21 on: February 18, 2009, 09:45:25 AM »
Ahh, but step-mom bought a condo in Arizona, and the house she's letting me move into is currently standing empty, and in this market, is completely unsaleable.  She doesn't want to move back, so she's actually happy to have someone in the house to keep it up.  She knows I'm on a no-budget budget, so she's not going to charge me rent.  I'm moving from my dumpy little trailer by the highway to an beautiful A-frame house in the woods with a garage, a hot tub, its own pond and miles of walking trails.  It's not a compensation for losing all the health and energy I've got on home hemo, but it's certainly a nice upgrade from the place I'm in now. 

So yeah, I will get along with her quite well!
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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.
Bill Peckham
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« Reply #22 on: February 18, 2009, 09:53:13 AM »
Quote from: jbeany on February 18, 2009, 09:45:25 AM
Ahh, but step-mom bought a condo in Arizona, and the house she's letting me move into is currently standing empty, and in this market, is completely unsaleable.  She doesn't want to move back, so she's actually happy to have someone in the house to keep it up.  She knows I'm on a no-budget budget, so she's not going to charge me rent.  I'm moving from my dumpy little trailer by the highway to an beautiful A-frame house in the woods with a garage, a hot tub, its own pond and miles of walking trails.  It's not a compensation for losing all the health and energy I've got on home hemo, but it's certainly a nice upgrade from the place I'm in now. 

So yeah, I will get along with her quite well!

Are there resources in the area around your MIL's house that might be able to drum up a helper? Move yourself and NxStage to the A-Frame?

Your helper could sit in the hot tub while you dialyze.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
jbeany
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« Reply #23 on: February 18, 2009, 10:13:55 AM »
Unfortunately, I haven't come up with anyone willing to put in the time yet.  The friends I have capable of dealing with the blood and the needles don't have the time -they've got full time jobs and kids, or they run their own businesses, and work 80 hours a week as it is.  The only friend I've got with enough time faints whenever she gets near a needle, and is a complete flake in an emergency situation, so she won't even consider trying it. (I've seen her panic over something as simple as a flat tire - I don't want to see what she does when my needle sites start spurting.)  As the southerners say, "Bless her heart. . ")

I've only had a couple of days notice on all of this, so maybe something will come up in the future.  If I do find enough help, I can always get the NxStage back, though - there's plenty of room at the house.  There's a "playroom" set up in a second building that has heat and water, so it would be a great place to set up my very own dialysis center.
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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.
kitkatz
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« Reply #24 on: February 18, 2009, 04:40:23 PM »
Have you asked nursing students in the area?
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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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