I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: amanda100wilson on February 04, 2013, 02:13:59 PM

Title: extended is a go!
Post by: amanda100wilson on February 04, 2013, 02:13:59 PM
i was planning on starting extended at the beginning of the year, but the corporate office for my dialysis unit, got to know about it and put the brakes on it.  Anyway, lots of communication later, they have finally agreed to support it.  not sure how much My input influenced their decision, but I am happy about it. :bandance; :bandance; :pics;
Title: Re: extended is a go!
Post by: big777bill on February 04, 2013, 02:36:58 PM
 Congrats hope all goes well for you. :2thumbsup;
Title: Re: extended is a go!
Post by: justjen321 on February 04, 2013, 02:54:26 PM
Way to use your voice!

When do you get to start?
Title: Re: extended is a go!
Post by: SugarBear on February 04, 2013, 03:04:04 PM
Sweet!  Glad it got work out.
Title: Re: extended is a go!
Post by: amanda100wilson on February 04, 2013, 04:41:27 PM
as soon as they get all the stuff and as soon as I get my spare room sorted out.  Wonderi g if I can train a dog to be a therapy dog, to rouse Steve in the event of a problem?  since we are getting a new dog this year, wouldn't it be cool to have adog that I could take amywhere?
Title: Re: extended is a go!
Post by: boswife on February 04, 2013, 07:09:49 PM
Amanda, if you were to train your dog to 'assist' you and or hubby, (im not trying to be smartie here) and would be needed for your condition, you would want  to label it 'assistance dog, or service dog' if you want to be able to take everywhere. (states 'may' call it different names, but a " therapy" dog does not have the same allowances as far as i know)  Being kidney failure is considered a disabling condition, and dog very well can be trained to assist you,  you would have what you want.  I value these dogs and all they do for their humans, and if 'trained' for the job, and they pass the 'public access' testing and all, I  :bow; to each and every kind out there.  My dog is a 'natural' alert dog and has aloud me to go out on my own.  Otherwise, i would have to have someone with me during times of my illness.  God bless these creatures :)
Ohhhhhh,, and  :2thumbsup;  on your extended!!!!  I sort of envy you, but beings im not the one on it, and hubby doesnt want it, we're staying with daytimes.  I will be loveing hearing how you like it though.  You did great getting what you wanted!!!!!
Title: Re: extended is a go!
Post by: KatieV on February 05, 2013, 08:30:41 AM
Amanda,

Please tell me how you talked them into it...I was just denied extended by the administrative board at my hospital.  I'm pretty disappointed. 

"They" say that with NxStage that dialysis doesn't "run" your life; however, I've found that because I work full-time there isn't much time for anything but work, dialysis, and ~6 hours of sleep a night.

Anyway, I'm very happy for you!
Title: Re: extended is a go!
Post by: Angiepkd on February 05, 2013, 09:01:43 AM
I would love to do extended, but don't have a center near me that supports it. Congratulations on winning that battle!  Please keep us posted on how it goes. Very interested in this option!
Title: Re: extended is a go!
Post by: Desert Dancer on February 06, 2013, 05:25:29 AM
Amanda,

Please tell me how you talked them into it...I was just denied extended by the administrative board at my hospital.  I'm pretty disappointed. 

"They" say that with NxStage that dialysis doesn't "run" your life; however, I've found that because I work full-time there isn't much time for anything but work, dialysis, and ~6 hours of sleep a night.

Anyway, I'm very happy for you!

"They" don't have any clue how dialysis affects a patient's life, NxStage or otherwise. "They" could not find a clue if they drenched themselves in clue pheromones and stood in the middle of a clue field during clue mating season. "They" do not have final say over your quality of life or the modality you choose. Don't take no for an answer. Find a different clinic if you're able and tell them you will take your money elsewhere if they won't co-operate.

It's YOUR life. It's YOUR health. "They" have no right to dictate how you will live, period.
Title: Re: extended is a go!
Post by: KatieV on February 06, 2013, 06:02:30 AM
"They" don't have any clue how dialysis affects a patient's life, NxStage or otherwise. "They" could not find a clue if they drenched themselves in clue pheromones and stood in the middle of a clue field during clue mating season. "They" do not have final say over your quality of life or the modality you choose. Don't take no for an answer. Find a different clinic if you're able and tell them you will take your money elsewhere if they won't co-operate.

It's YOUR life. It's YOUR health. "They" have no right to dictate how you will live, period.

That's exactly what I did yesterday.  I called up the Rubin Center in New York and asked if they take out-of-state patients for their nocturnal homedialysis program.  They do and we have an appointment on Monday to visit and get more information!  They offer remote monitoring through the internet.

I drew labs last night for antibody/HLA testing for the Texas Transplant Institute.  I am working on getting into their paired exchange program (need a live donor tested).  It feels like my life is finally moving forward!