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Life with PD

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  • Life with PD

    Hey guys,

    My name is Osagie. I'm a designer working with a medical manufacturing company to revamp their inhome PD machine. As I've immersed myself in the lives and stories of a few PD users, I've caught a glimpse of the tension facing this community every day - the angst between the gritty reality of navigating life with this condition and the hope that in just a moment it can all change. This is especially pertinent because of one my friend's dad's is just now starting to experience his own kidney issues . Not having kidney issues myself, I know empathy can only go so far. I'd like to hear more about the frustrations, gripes, victories, challenges, and milestones of other people who have lived with an inhome PD treatment. I know this is an obviously sensitive issue but if you're willing to share let me know by replying to this thread. Thanks guys.

  • #2
    The biggest issue I face is that if I am not upright when the final drain happens, it will not entirely drain me (I am supposed to be "dry" for the day) I am on tidal for the first 3 drains since it does not drain all the way. I normally get up and drag my stuff into the bathroom when the final drain happens otherwise I will have to manually drain myself at the end when I look at the UF numbers and they are lower than my normal drainage. The other issue (which I dont know if there is anything that can be done about it) is the alarms at night if I roll the wrong way and or one of the lines is kinked etc... other than that I like being able to do it at home, my blood pressure is more even. I do have a belt that I wear that the catheter goes through, but maybe different solutions for back sleepers, right side sleepers, left side sleepers to position their caths while sleeping.

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    • #3
      Hello! When my UF is lower then my other UF. I had asked my Dr. about it. He said my intake of food and what I drink was less. I notice on days I donít eat so much or drink so much fluids. My UF is low. Speak to your Dr. my nurse tells me to make a loop at night. I wear a belt during the day

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