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Nocturnal HHD

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  • Nocturnal HHD

    What to expect

  • #2
    I've been doing HHD for about 2 months in the evening.

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    • #3
      The long duration and slow blood flow and fluid removal rates of nocturnal hemodialysis are as close as you can get to normal kidney function. In contrast, the short duration 3X weekly treatments that are the stock and trade of in-center dialysis prove a true "shock to the system" as an effort to replace 176 hours per week of normal kidney function with 10 to 12 hours of genuinely harsh dialysis.

      This is one of the many reasons that the average time to death on dialysis is 5 years. Considering that approximately 5% of those on dialysis treat at home and an even smaller percentage treat nocturnally, folks dialyzing in-center will heavily skew the mortality statistics. I remind my transplant program team members of the vastly different mortality statistics for HHD patients at every re-evaluation.

      I started HHD in July 2012 with 5X weekly treatments of roughly 3 hours duration each - 15 hours of dialysis. I April 2013, I participated in the second FDA trial for the approval of NxStage System 1 Cycler in home nocturnal hemodialysis. Since that time I have treated up to 3X weekly with up to 8 hour duration nocturnal hemodialysis and 2 or 3 times weekly short daily hemodialysis treatments working an alternating 4X and 5X weekly treatment schedule.

      I was able to work demanding full time technical professional jobs for the first 5-1/2 years as an HHD patient. Reaching my mid 60's, the progression of PKD and the demands of up to 29 hours of combined nocturnal and short daily dialysis made continued full time employment virtually impossible. However, having been able to work those last 5-1/2 years enabled me to boost my net worth some 30% along with adding significantly to retirement savings to assure financial security. Had I elected disability in 2012, my financial situation would be far less secure.

      Nocturnal hemodialysis does present challenges of getting a sound night's sleep. Even in the absence of machine alarms, the ambient noise of the Pureflow SL and System 1 Cycler take some getting used to. The blood chemistry changes that occur during an 8 hour treatment tend to bring me to consciousness after 3 to 5 hours of sound sleep and getting back to sleep has its challenges. Trazadone does help as a mild sedative but it rarely permits me to sleep during the entire Tx. Concluding a nocturnal treatment between 3:30 am and 5:00 am permits a return to my regular bed and several hours of sound sleep before having to get up for day. When I worked, I was only able to get 1 to 2 hours sleep after treatment before rising for work.

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      • #4
        I'm a little late to the party here, but my info may be helpful. I am the care partner for my wife who has been on dialysis for an amazing 44 years--since she was 15. Three transplant attempts over the years have failed. She has done every modality of treatment, and has been on Nocturnal HHD since 2003. I have been her care partner since 2007, on NexStage until 2010, and the "Baby K" since. We do it every other night, 7 hrs. per treatment, at a mild 220 flow. Her labs are outstanding and her diet is basically unrestricted. HHD is the closest to living a normal life, in that we can set our own hours, during sleeping times. Glad to answer any questions, but I think the knowledge that there is a high results, low disruption treatment regime available is good news for a lot of people whose education is neglected by many doctors and clinics.

        Please check out her web site at www.lifeonthebridge.com.

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