One sister said to my other sister, "Maybe Heather's cysts will shrink after a while."
Nope, doesn't work like that.
Another family member said, "But you're stable, right? You just have to make sure your cysts don't grow any more, right?"
Well, it's not like I can really control the growth of the cysts. That sort of reminds me of the time when an old boyfriend asked me why so many women so often had "accidents" when they were on their period. He said, "Isn't it like pee, a flow you can control? It all comes from the same place, right?"
Um, no. Sorry.
Even my FIL was surprised to hear that DH and I are worried about how we could financially swing a kidney transplant. "Heather's going to need a kidney transplant?"
Well, hopefully, maybe not. Probably, statistically speaking, yes.
So how do I educate everybody around me about PKD, short of posting a fact sheet on my forehead?
Part of me thinks that people aren't really all THAT interested, or even all that comfortable talking about the disease. After all, it is something kind of heavy, and not something most people have to deal with, or even have to face very often. It's easier to get a 3 second sound bite of info, nod appreciatively, and move on.
My husband finally showed my FIL some pictures of healthy kidneys versus polycystic kidneys, which certainly drove home the point that my kidneys are not, and never will be, normal. Still, I'm not sure that even that was enough, as there are many other factors related that aren't covered by a groty kidney picture (something I never look at anymore, by the way. Too freaky. I've seen them on ultrasound, and that's enough for me, thank you very much!)
I suppose I just need to cut everybody a lot of slack, as they aren't as affected by this as my immediate family, and therefore don't spend hours trolling on the internet, medical journals, anatomy books, etc for every scrap of information available on kidneys and this disease. I'm still going through my own adjustment period. I suppose it's only fair that I let others go through theirs.