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Nocturnal HHD Using NxStage System1

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  • Nocturnal HHD Using NxStage System1

    I am involved in a trial to seek FDA approval for the use of the NxStage System1 Cycler in nocturnal home hemodialysis. I have been treating with HHD since July 2012 (training) and home since September 2012.

    I completed the first two months of the trial using short daily HHD with the NxStage System1 Cycler and began the nocturnal portion of the trial two nights ago. Since this is a very new dialysis modality, I'm interested to learn of the experiences of others who have performed nocturnal hemodialysis in-center or at home with NxStage or Fresenius dialysis equipment.

  • #2
    I am also participating in the same study that is seeking FDA approval for the Cycler. So far this has been a great switch for me and my family. I learned in June of 2012 the HHD and went home in July. Although I cannot compare my experience to In-Center HD (as I started as a HHD patient) I will say that I find the nocturnal HHD to be far better than the short daily that I was following before.

    I have to small kids 2 and 4 and work a normal 8-5 job; so the ability to put them to bed then get on the machine and sleep all night is better than falling asleep while on the machine and then waking up at 12 or 1 in the morning after two hours of sleep. It has helped my mood and demeanor tremendously. I have high hopes to continue this modality long after the study is complete.

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    • #3
      I am nearing the end of the study (nocturnal portion) and looking forward to being able to treat either nocturnally or daily. I can strongly relate to the issues you've had with daily. I too know only HHD starting training in July 2012 and "going home" in September 2012. I arranged my original daily HHD treating schedule to provide my off days during the week to limit the number of midweek/work night treatments to two. I would always treat on Friday, Saturday and Sunday, mostly in the evening, but during football season on Sunday afternoons.

      My schedule at home did include enough week night television viewing to cover a a good portion of my 2-3/4 hr treatment time, but did occassionally run into some late nights, e.g. we were watching a lot of Late Night with David Letterman. Since the switching to the nocturnal portion of the study we haven't watched a single installment of Late Night.

      I prefer to get into the office by 7:00 am and this necessitates a 5:00 am rising and end of treatment to provide the time for showering, lunch making and other pre-work preparations. My wife/care partner is not a morning person and the first few weeks of nocturnal were brutal - she stayed up after the 5:00 am rising and ate, gaining 4 pounds. Since then she gets up and pulls my second needle, I hold pressure and she goes back to bed. After she gets up, she strips and cleans the machine. I usually prepare and make the batches of dialysate with the PureflowSL, unless I'm travelling and then she will make the batch. The change has worked well and she quickly lost the weight and got back on her regular "schedule". The downside of nocturnal has been the need for an early "lights out" to support the 5:00 am rising.

      We are on vacation right now - some 1000 miles from home - having driven here several days ago. We transported the NxStage System 1 Cycler and supplies for 5 treatments and NxStage sent 12 cases of dialysate bags and 6 cartridges for the 4 treatments we planned to conduct once at our destination. All has gone smoothly with the two treatments we've performed nocturnally with bags and we've got two more before our planned early am departure to drive back home.

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      • #4
        I wanted to ask where you were trained. I was living in the Milwaukee area when I was trained and worked with the staff at Bluemound Dialysis in Wauwatosa. I noticed from your profile that you live in Milwaukee so I am guessing you had the same great team I worked with.

        I hope you had an outstanding vacation. Although they *(vacations) are not exactly the same as before at least we can still take them.

        It was very nice of your wife to assist with the process in the morning that early. We have worked things out a little different at our house. Although she is always willing to help I have figured out how to pull the needles and hold pressure on my own without assistance. My fistula is in the Left forearm location which allows me to pull them while holding pressure. My wife also likes (needs) her sleep so I have really worked at doing this on my own.

        BTW - I am a PKD patient that is currently listed in Madison WI. I was listed at Freodert Hospital but my new insurance won't allow it as their not on their list of approved facilities.

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        • #5
          I suspected that we might share the same training clinic - DaVita Bluemound At Home on 99th and Wisconsin. They are a great bunch and have been pioneers in HHD. Being a PKD patient affords more Tx flexibility as we don't have the same fluid build up issues.

          We just got back from upstate NY yesterday evening after a 16 hour drive. We encountered a good deal of rain during the first 1/2 of the dirve and some very punishing traffice through the Circle in downtown Chicago - but we made it and had enough "in our tanks" to unload, unpack and re-set up our dialysis room and start a batch of dialysate in the PureflowSL. While in NY, I treated nocturnally 4X over 5 nights without a hitch. Our social obligations had me hooking up as late at midnight on at least one occasion - but being on vacation, we could sleep in.

          I'm fascinated to learn of your double site pressure hold technique. I pull the venous needle and hold pressure and once tried pulling the arterial whilst holding venous and ended up bleeding through the associated gauze on both sites and concurrently called for my wife to assist. I could hold pressure on the one site and once clotted, pull the second (arterial needle) but I prefer to hold both at the same time and reduce the combined time of the individual sites.

          I am listed at UW Madison Hospital & Clinic and at St. Luke's Medical Center. I transferred my time from St. Luke's and now have nearly 2-1/2 years on the UW Madison list - the time I was told the wait was for a type O kidney. We've assimilated both the nocturnal HHD and even daily HHD gigs so well that there's no urgency for a transplant. Check out my other posts for the successful accommodation of work and work travel.

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          • #6
            Question, I recently heard of NxStage for night time use. My wife has been using the Cycler since 2005, with a one year off after a failed trainsplant. Is this strictly through Divita? We are in Aurora IL, both of us work full time, and being able to do this at night would be HUGE (especally since we are taking the machine to Hawaii on vacation in August.)

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            • #7
              Hello BlueSky08,

              It is my understanding that NxStage is still enrolling HHD patients in their Nocturnal Study with the use of the System1 Cycler. Your wife sounds like a great candidate. I'm uncertain on the scope of the study, e.g. limited to DaVita HHD clinics, but would suggest you make inquiries at your clinic and with NxStage.

              I am in Milwaukee and my clinic, DaVita Bluemound At Home, has patients including myself that have participated in the study since February 2013. It involves 2 months of daily Tx's and 3 months of nocturnal Tx's using the NxStage System1 Cycler.

              I just completed the complete study two weeks ago and I am now treating with a mix of daily and nocturnal and adjusting my dialysate processed to reduce the treatment times for daily and increase the dialysate processed for nocturnal - without increasing treatment time - a boon to my schedule for full time work and travel as required. In fact I've been in the Denver area on business since Tuesday night, got a daily treatment at a local DaVita in center dialysis clinic yesterday and will not return home until Friday night where I plan to complete my 5X per week Tx schedule with a 40 liter nocturnal treatment that will end around 5:30 am when that remainder of the 60 liter batch of dialysate I made on Tuesday morning will expire. It's like a Mission Impossible episode focused on the scheduling challenges of HHD while working and traveling.

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              • #8
                Hi BlueSky,

                Have you spoken with your wife's doctor? I would start there and then see what the next steps are. Good to hear that you're exploring your options and being proactive! Enjoy your vacation in Hawaii :-)

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                • #9
                  Hello, congrats on your decision to try extended hemodialysis, am sure your gonna find it amazingly beneficial to your long term road ahead. I started myself back in late 2004 when Nxstage System One was still in FDA trials for Short-Daily ...along the way I went from 6x weekly ... 5x weekly... and now am at 4x weekly from 4-5hrs.... I don't use heparin at all, only 2 asprin. Keep in mind that the amount of hours per treatment varies from person to person, depending on weight, height and/or other factors, so in a sense a much bigger, heavier person may need longer treatment time.


                  Originally posted by stumpr54 View Post
                  I am involved in a trial to seek FDA approval for the use of the NxStage System1 Cycler in nocturnal home hemodialysis. I have been treating with HHD since July 2012 (training) and home since September 2012.

                  I completed the first two months of the trial using short daily HHD with the NxStage System1 Cycler and began the nocturnal portion of the trial two nights ago. Since this is a very new dialysis modality, I'm interested to learn of the experiences of others who have performed nocturnal hemodialysis in-center or at home with NxStage or Fresenius dialysis equipment.
                  My Blog Site
                  Http://www.dailyhemo.org
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                  • #10
                    Looking to try nocturnal hhd, been home for 2 months and the days are getting longer. My wife has to work and just wanting to know how this works with checks during the night

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                    • #11
                      There are no checks during the night only response to alarms in the event of venous pressure dips or spikes. You must have a care partner within earshot of you during the night. My spouse/care partner sleeps in my regular bedroom during the night at home and in the same bed when treating in a hotel room..

                      When starting a nocturnal Tx I will take four (4) sets of vitals readings and call it a night. Those readings occur during the first 15 minutes of the Tx. BFR's for a 6-8 hour nocturnal of 30 to 35 liters of dialysate can be as low as 200 or 250.

                      I run at 350 to reduce the chance of a venous needle tube clot. The usual chevron paper tape with 2x2 gauze covers to secure needles and blood line routing up my access arm secured by three elastic Velcro straps and across my chest back to the cycler with blood and saline lines held together by my self designed and fab'd line clips, keep me tangle free through the night on a twin mattress or hotel king size when traveling.

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