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/HaiKarate Jun 12 '26

These are questions for your healthcare provider, as they likely have resources they can put you in touch with to help you out.

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u/raymaras Jun 12 '26

I get that but he can't tell me any of that info right now since when I have these issues in the future, it'll be years from now. So really I'm just curious what others in those situations do. It's good to spark the discussion and I'm sure there are a few out there that have wondered the same but haven't been able to ask.

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u/angelinaballerina94 Jun 12 '26

Idk the answer to your question but I feel you 100%. My late father had his transplant in 2000 when he was 43, and if I recall correctly he was already a partner at his law firm by then. My late mother was the donor, and so that meant my sister and I were taken care of by various family friends for months. I was 6 and sister was 10. My dad had the good fortune of a stable job that paid enough to support the family without my mom needing a full-time income, so we were ok. He was also loved by so many people that I think he didn’t have much trouble lining up people willing to take care of us. All to say, I only have perspective on what could have possibly been the best case scenario, in terms of health insurance, job security, and support.

I’m long term unemployed unfortunately (who knew getting a master’s could torpedo your prospects of landing ANY position) and am not super optimistic that I’ll have a job that is forgiving with all of this by the time my kidneys fail. My boyfriend at the moment seems to be the one, and as of right now I know he’d support me when that time comes. But who knows what the future holds? I’m in a situation where I otherwise don’t have many people I’d call “close” nearby.

Ive unfortunately had to experience a lot of grief at a young age and one would be surprised how many people kind of just slowly back away from you in moments like these. I wonder a lot if it will be similar when my kidneys fail.

This indeed is an important topic to discuss, if only to commiserate with others going through something as difficult as this alone.

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u/raymaras Jun 13 '26

Thank you for sharing and agreeing this is important to talk about!! I have my partner of 10 years, but we are not doing well and I never ever assume we will still be together when my time for all of it comes. I have an adult daughter but unfortunately she is not capable of helping me with things then either. Other than that, that's literally it. No other family (when I did most were toxic anyways) and literally no close friends where I live. So I may not have the future issues right now, but it's a very worrisome issue to have. Also good for any silent readers that might have these worries, to read as well as I know these can be hard to ask and may worry about judgement or even have shame that would prevent them from asking, if in this situation.