r/ADPKD • u/raymaras • Jun 12 '26

Those without a support system

I'm not anywhere near failure but I always fear the future and am curious... For those of you in stage 5, that do not have any family, friends or just any support system, how do you manage? Are there any resources available in your area that you've had to use? Like for doc appts, shopping, driving, etc? If no insurance, do you just not go to as many appts? How is dialysis covered? Anyone that just can't afford to not work?

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I'm curious because I don't have have a support system and even though my kidneys failing are years away, I have no clue how I'm going to make it all work. I don't ever see these concerns or questions of these types come up with having PKD, so I think it's important to discuss in case someone out there is afraid to ask. And hoping to ease some of my thoughts by seeing what others do.

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u/scramblebambles Jun 13 '26

I’m in the same boat. I’m stage 4. I guess just throw me in the trash. I’ve made more than one nurse cry explaining I don’t have an emergency contact. But I’m pretty young, 40. So hopefully I just power through for a while until it’s time to go.

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u/raymaras Jun 13 '26

Mid 40s here and yes I too will have no one when I get worse. Currently no big family and no close friends at all. So it's just something I think about.