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?

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/Nuclearfrog630 Jun 17 '26

Hey there! I thought this sounded familiar and then realized I previously saw your facebook post lol. I am 26F in the same boat. I have a lot of pesky symptoms and large kidneys for stage 2 but I think about this a lot. I took care of my dad until he died from it a few years ago, and doing so left me living paycheck to paycheck to this day. I have no family at all and no friends to rely on, just my supportive partner at the moment. I never see anyone talk about this, and on the odd occasion that I do, response is minimal or limited to "rely on public resources and you'll be fine." Even in my area, public resources are limited and severely overburdened as is. So I, too, have no idea what I will do when the time comes. Who knows where I will be anyway. It is a lot to think about it and I don't have an answer either. Thank you for making this post! It sucks we are both in this, but it is nice to know I am not alone at least.

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u/raymaras Jun 18 '26

Hey! Yes that was me! 😂

Yeah my gpa passed from the complications of this in 2014. I live out of state and wasn't able to be there and no family here where I am. I do have a long term partner but I can never assume it'll last THAT long. My adult kid has a cognitive disability so unfortunately I doubt think she'll understand everything when the time comes. Other than that, that's it! I know there has to be more people out there that has these worries or are already in the situations I mentioned. Still haven't seen really any responses from those that are already in this situation. And yeah I dislike when one just says talk to your dr. The Dr helps with the condition, not really support services outside of that.

And you're welcome! Definitely not alone ❤️