Hi everyone,
I’ve been reaading your input about getting the word out about home home and I agree wholeheartedly. I just wanted to let everybody know that my story with NxStage will be featured in December’s issue of Nephrology News and Issues (or at least that’s what I was told). It features charts of my bloodwork labs before starting the NxStage and after along with pix of my set up at home. I hope you get a chance to read it and looking froward to your feedback.
Hi PMB,
I will have to check it out. Are you on Nocturnal Nxstage? and what is your weight?
We are starting Nxstage on 10/30 to do it nocturnally with their water system. Do you use the water system?
Pat
I am not on nocturnal NxStage, only the short term daily. I have been using the Pure Flow system since Sept. 5th. I only use 20 liters of dialysate per treatment so I make a new batch every 3 days. I wait til I go to bed to make the batch.
Making the batch does not interfere with the dishwasher, washer, or other appliances. I was worried about the water pressure but I have not experienced any problems.
The instruction booklet is well written and I followed it at first when making new batches, changing the purification PAK and so on. Once you do it a few times, it will be routine.
I, like the others, are eager to hear how the nocturnal works for you. Best of luck to you and your husband.
Hi PMB,
What exactly do you do to make the batches and how long does it take?
Have you ever used the method where you hang dialysate bags as I am wondering which method is the easiest?
Have read that with the Pureflow system the batches are not sterile like the bags, but ultra pure. Articles seem to say that the difference in sterile and ultra pure are not significant, but I wonder. Only someone who has tried both methods could say.
Yes, I used the dialysate bags for about 17 months and will continue to do so when I travel.
Making your own fluid requires a water line from a water source and a drain line. I ran mine from the machine, drilled holes in the floor by the machine, then underneath the house and up under the kitchen sink where it all attaches. Same with my drain. All the attachments to do this comes with the Pure Flow. My brother and husband did it themselves.
It takes about 7 hours to make a batch of 60 Liters. Mine lasts 3 days. The batch lasts only 72 hours so the last day you have to watch the time. The machine will not let you continue if you have gone past that 72 hour time limit.
I have not noticed a difference in the way I feel between the two methods. I do think the Pure FLow keeps the dialysate warmer than the side warmer on the cycler. Therefore, I stay warmer.
Also, storage for the supplies for the Pure FLow is much less than all of the boxes for the dialysate bags. I’ve gone from a delivery of around 55 boxes a month to a deliver of less than 10 boxes a month.
PMB, thanks for the info. We will be making 60L a day for the nocturnal and since hubby is large 120K, we will use all each night.
Can’t wait.
Pat
Pat who did you talk to about making the switch? Shari, Chris, Dr. Hoy or
Wayne?
Marty,
I have been bugging them for months. Shari finally asked if we were interested. I/We said YES!
You have been mentioned as a possible down the road. They will upgrade the internet stuff once we are on and everything is working.
You might want to tell Shari you are interested.
Pat
Thanks PMB. I was wondering what is involved in actually making the batch- the steps for that and the time in minutes.