u/ImaginaryMountain298

When I disclosed to my friends that I needed another kidney transplant back in May, I was overwhelmed by the offer of a friend of a friend (whom I've never met) to get tested and learn more about the process. We kept in touch about every week until the day of her full testing battery - 7/29. She texted me that morning to check in -- and I haven't heard a word from her since.

Obviously I don't want to pester her, and any number of things could have happened (including simply changing her mind), but it sucks to not know for sure what's going on.

Bummed. 😥

I'm a PKD patient, living related donor kidney xplant in 2012, living unrelated donor liver xplant in 2021. My kidney graft started failing gradually a few years ago, then suddenly over the last few months. In January GFR was 15%, now it's 5%.

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I'm reeling because for years a sibling has told me that they would be a kidney donor when the time came - and then this past fall, when I started the listing process, they had a change of heart. I totally get it, I don't want them doing something they're not 100% okay with, but I've only had a few months to make a pretty big leap in mindset that I'm not going to be able to avoid dialysis. Due to living donor previously, I have not ever had to have it.

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Due to rapid decline over the last week, I'm in hospital getting a chest catheter tomorrow to start emergency dialysis. The plan is to transition to home hemo (or possibly PD, which is a long shot) when I can.

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So - I'll be going home with a graft in my arm that needs to heal, while also going through the adjustment to the dialysis roller coaster. I'm not ready, mentally or logistically. I have a great medical team and family support, but I'm worrying about logistics. What should I be thinking about? What are tangible things I can do to be prepared, aside from making sure I'm caught up on my bills? TIA.