I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: fearless on September 07, 2012, 10:02:31 PM

Title: where (geographically) are the extended therapy people?
Post by: fearless on September 07, 2012, 10:02:31 PM
It's possible this has been discussed, i have tried to do some reading...

But I'm wondering: for those of you doing Nxtstage for several hours at a time, where are you living?  I need to find a clinic that will support that therapy and I'm prepared to move since I've recently become very disenchanted with my doctor (for other reasons)
Title: Re: where (geographically) are the extended therapy people?
Post by: Bill Peckham on September 07, 2012, 10:54:27 PM
It's possible this has been discussed, i have tried to do some reading...

But I'm wondering: for those of you doing Nxtstage for several hours at a time, where are you living?  I need to find a clinic that will support that therapy and I'm prepared to move since I've recently become very disenchanted with my doctor (for other reasons)


Seattle WA via Northwest Kidney Centers, they have 14 units in the Seattle area (and Port Angeles). If you are going to have CKD, Seattle is the place to do it.



Title: Re: where (geographically) are the extended therapy people?
Post by: fearless on September 08, 2012, 07:17:36 PM
Thanks Bill :)

 :thx;
Title: Re: where (geographically) are the extended therapy people?
Post by: justjen321 on September 08, 2012, 07:30:40 PM
Indiana. :) Our clinic is Wellbound of Lafayette. If there's one near you, I can't recommend them highly enough.
Title: Re: where (geographically) are the extended therapy people?
Post by: SugarBear on September 08, 2012, 07:41:25 PM
Bigger cities do have more options to offer.  I live in New York City and there are tons of locations and options to choose from with the NxStage machine which include daily short hemo and nocturnal home hemo.  But you can also choose from in-center nocturnal which some prefer as it is not as demanding as at home. 

I think you should also be asking about restrictions that people are place under.  For example, I start in a Davita center that would not use the Pureflow machine, offer a chair, or allow nocturnal. Without Pureflow, I had to cram all of the boxes of the supplies into my cramp room, between 80 to 100 boxes a month. They also required I document vitals and pressures from the machine and fax them back the very next day.  Personally, I think it was to make sure patients were not sleeping through their treatments.  Also, I was required to have a partner which was my major gripe as it was taking a toll on my sister at the time which spur me to quit short daily.

Fortunately, I found a nonprofit dialysis center that makes patients a priority.  They insisted in nocturnal and usage of Pureflow. No partner was need as the NxStage machine sent all of the information to the center through the internet where two technicians would view the it and call if necessary.  They even offer me a chair, but I could not fit it into my bedroom. 

Just something to think about before you choose your new location.  Good Luck.
Title: Re: where (geographically) are the extended therapy people?
Post by: boswife on September 09, 2012, 10:29:36 AM
san diego ca....  ours is good but could be better.  ;)
Title: Re: where (geographically) are the extended therapy people?
Post by: fearless on September 09, 2012, 03:52:17 PM
thank you all so much!  you guys are great.  I promise not to move in next door to you without checking in first.....
 ;D
Title: Re: where (geographically) are the extended therapy people?
Post by: boswife on September 09, 2012, 04:06:58 PM
your funny fearless.... i honestly am (to a point  ;) )  that *fearFUL*  of saying anything for REAL fear of someone comming even close to me  :embarassed:  I feel quite brave for saying anything here so it really cracked me up that you gave us the heads up...  :cuddle;
Title: Re: where (geographically) are the extended therapy people?
Post by: fearless on September 09, 2012, 04:37:10 PM
boswife, I know what you mean (that's probably why I said that - all humor has some basis in self)
cheers
Title: Re: where (geographically) are the extended therapy people?
Post by: boswife on September 10, 2012, 09:27:20 PM
 :grouphug;  Hoping some goodness is heading your way  :cuddle;
Title: Re: where (geographically) are the extended therapy people?
Post by: ESRD Survivor on September 11, 2012, 04:55:06 PM
Peoria, Az     North Phx dialysis center, had a great training nurse.
Title: Re: where (geographically) are the extended therapy people?
Post by: chiawana on October 02, 2012, 07:58:33 PM
We're in Boise, Idaho. Our HHD nurse works through DaVita, and her area consists of a big chunk of eastern Oregon as well as SW Idaho. Geographically a huge area. She is accessible to everyone she's trained and is a real blessing to all of us. She has had a 100% success rate with everyone she's trained - not one couple (patient/care partner) has dropped out of using NxStage. I credit her all the way.
Title: Re: where (geographically) are the extended therapy people?
Post by: M3Riddler on October 12, 2012, 02:21:08 PM
It's possible this has been discussed, i have tried to do some reading...

But I'm wondering: for those of you doing Nxtstage for several hours at a time, where are you living?  I need to find a clinic that will support that therapy and I'm prepared to move since I've recently become very disenchanted with my doctor (for other reasons)

I live in VA and do extended.  You shouldnt have to move anywhere or switch to a different clinic. All you should have to do is speak with your nephrologist and let him/her know that you would like to do more time on your treatments. Even though they should know that more dialysis is better, take some proof in to show that you have been doing your homework and you are looking out for your long term survival.
There is no reaon why you shouldnt be able to extend the treatment. Even if its just a half hour or hour. Its more than you are on now. Then bring the issue up again later.  The nephrologist has authority to add time to your treatments. 
It may not cost a penny more depending on how many liters you are currently on. All you have to do is change a few settings. Extended doesnt necessrily mean its going to cost the center more.. in most cases it does not and there is no new equi;ment that needs purchased other than perhaps heparin. But each case is different.  Just dont give up and fight for yourself. 
How many hours are you doing now?  How many liters? What is your bloodflow?