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  • Sometimes frustrated

    Hello, my name is Tim. My wife is on hemodialysis. She has been on dialysis for 10 years and we've been doing nocturnal home dialysis for a year now. For the most part, it's a regular daily routine, but there are times that gets really frustrating. Mostly because when the alarms keep going off I'm half asleep. So trying to troubleshoot problems gets harder. I try not to lose my cool because of my wife but sometimes I can't hide my feelings.

  • #2
    @timothycsr

    It is going to be difficult and I understand that. You might want to ask your wife if she CAN TRY to sleep like a log to avoid any kinks to the wire. I am not familiar with nocturnal dialysis, but you may want to see if you can make sure the space is clear between your wife, the bed, and the machine you use for nocturnal dialysis. Have the lines spaced out in between too - just to avoid any disturbances. You can also try to make time to talk one on one with your wife about this too, but make sure you are calm and collected when talking to her about this. I am sure it pains your wife when she sees her husband overwhelmed and frustrated with taking care of her.

    Being a caregiver is not an easy road, but YOU know for a fact you are helping someone you love to the very end. Even if it does become problematic.

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    • #3
      Hello Timothycsr,

      I've been conducting nocturnal HHD since April 2013 along with short daily HHD. I normally treat in a room in our home that we set up for hemodialysis. It is equipped with a day bed, which I sit on during short daily treatments and sleep in (alone) for nocturnal treatments. We have taken the NxStage System One on the road and treated in hotel rooms enabling me to treat and sleep in the same bed with my care partner/spouse.

      I've employed my mechanical engineering education along with a career in quality and process improvement to take the waste and variation out of every aspect of the HHD process over the nearly 6 years of practice. It sounds like your wife is getting needle tube lines kinked as she moves around during sleep. Needle tubes are quite thin and are easily kinked or compressed. Either condition will cause the Cycler to alarm in response to increased or decreased arterial or venous pressure.

      I have prevented needle tube kinking by routing the needle tubes along with the respective blood lines up my access arm and over my upper arm to cross my body and run back to the cycler. The lines are held in place on my access arm via elastic velcro arm bands fastened so as not to slip up or down my arm. I have three such arm bands with two on my forearm (forearm fistula) and one on my upper arm. The blood lines and emergency saline line from the cartridge are held parallel to one another with stacked plastic tubing clamps that I purchased from McMaster Carr. I use 4 of these tubing clamps spaced equally along the full length of the blood tubes. The blood tubes and saline line are fastened with velcro tape underneath the over the bed hospital table that sits in front of the day bed and also serves as my table for treatment set up and run.

      When I am "hooked up" the bundled lines resemble a small scale deep sea diver line set, except in this case the lines run to my access arm not a diving helmet. I have complete freedom of motion of my access arm and can do anything from computing, eating, writing, reading,.playing guitar, even light assembly work without tangling or producing alarms. I'd tried attaching some photos of my "rig" to aid comprehension but was unsuccessful. Message me and perhaps that will work..

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