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Author Topic: My doctor won't support nocturnal with NxStage.  (Read 4568 times)
Adam_W
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Me with Baron von Fresenius

« on: September 20, 2007, 09:40:27 AM »

I just had my monthly appointment with my doctor, and he said that he won't support doing nocturnal dialysis with the NxStage for two reasons. One, he's primarily focused on transplant, and two, he feels short-daily is good enough. Short-daily is very good, and I feel so much better with it then I felt with conventional in-centre, but I know nocturnal is a lot better. The only way I can get home nocturnal is to switch centres, and the only centre that offers it is a Fresenius centre, so if I switched I would have to give up the NxStage. I don't want to give up the NxStage, so I'm kind of in a rut right now. Superior dialysis, or travel freedom with the NxStage. I wouldn't have an issue with setting up, operating, and cleaning a Fresenius machine, and the extra space and home modifications wouldn't be a problem, but I like to take weekend trips with friends, and that's kind of hard, or should I say, impossible to do with a FMC machine. I've considered switching doctors, but one, I wouldn't necessarily get a new doc that would support nocturnal, and two, other than this one issue, my current doc is pretty knowledgeable, and he's nice. Ugh, decisions, decisions.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
goofynina
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He is the love of my life......

« Reply #1 on: September 20, 2007, 10:35:53 AM »

Hmmm, that is a tough decision BUT, you said you feel great with what your doing now right?  Then i'd say to stick with what your doing and enjoy your traveling as you can.  I'd hate the thought of you not being able to go somewhere or do something that you'd like cuz of the machine.  Your too young, life is precious, go out and enjoy it.   :clap;
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Hawkeye
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« Reply #2 on: September 20, 2007, 10:57:24 AM »

Ok not being a doctor or anything why cant you do nocturnal anyway?  Is it basically a thing were the doc would have to give you a script for more or different supplies?  Basically what I don't understand is if you can sleep on a dialysis machine at home or in center why not nocturnally?
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skyedogrocks
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« Reply #3 on: September 21, 2007, 05:05:23 AM »

Nocturnal is definitely better and we have asked Rob's Neph and nurse about it.  We want to wait for when NxStage is fully nocturnal, Rob doesn't want to switch machines. 

If you really want Nocturnal, then I would investigate it, it's your life, your neph should be supporting that.  Of course a transplant is key to many people on dialysis and if you want that, should work towards it.  But for the time being, you should be albe to choose what you want.

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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!!!!
Adam_W
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« Reply #4 on: September 27, 2007, 11:55:19 AM »

I just talked to the clinic doctor at my centre, and he has offered to take me as a patient, and he is more than willing to support nocturnal. I should be starting nocturnal in a week or two. I'll have to have a day or two of training to learn the differences of the nocturnal treatment, and to learn how to operate the external heparin pump. I was definitely not expecting to go into my monthly clinic visit and leave on the verge of getting nocturnal dialysis. I must say, I'm very happy about it  :yahoo;.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
skyedogrocks
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Rob showing off his pot of gold!

« Reply #5 on: September 27, 2007, 12:10:32 PM »

That's awesome!  What machine will you be using?
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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!!!!
Hawkeye
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« Reply #6 on: September 27, 2007, 01:30:12 PM »

Fantastic.  :yahoo; :clap; :2thumbsup;
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goofynina
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« Reply #7 on: September 27, 2007, 01:43:55 PM »

That is awesome Adam, hope it is all you expected and more, keep us posted on how your doing with it, k ;) ;)  Thanks amigo, and keep on keepin' on  :2thumbsup;
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Black
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« Reply #8 on: September 27, 2007, 03:04:17 PM »

Great news!  :2thumbsup; Please keep us posted.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
Adam_W
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Me with Baron von Fresenius

« Reply #9 on: September 27, 2007, 03:42:20 PM »

That's awesome!  What machine will you be using?
I'll still be using the NxStage. All I'll need is the CAR-171 cartridges, and an infusion pump for heparin. I'll also be provided with a moisture detector that will sound an alarm if it senses a blood leak.

Adam
Logged

-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
jbeany
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Cattitude

« Reply #10 on: September 27, 2007, 10:35:38 PM »

Will the machine still be set to do the system check every half an hour?  I think that shift in noise would drive me buggy when I was trying to sleep.  How many days a week will they have you on?
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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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