It's a book. My dad told me about at a family dinner the other night, and he said while he was reading it, my mom said, "Don't tell Heather about this book!"
Which means, of course, that 24 hours later, I had it on my Kindle and was halfway through it.
It's an interesting book. The literary snob in me says that it could have been edited better. Chronologically, she skips around a lot, which leaves the reader confused about timelines. I know she's trying to be interesting and thought provoking, but she doesn't pull it off. Not to be too morbid or anything, but I find myself wanting a spreadsheet of who died in her family when.
Still, editing issues aside, it's an intimate look into a family that has been devastated by PKD. The author's mother died of PKD, as did 5 of her mother's siblings. 6 out of 8 family members, dead from PKD. There is a picture of the family, and I showed it to my husband and said, "6 out of 8 of these people are dead from PKD." He said, "No babe, ALL of these people are dead because that picture was taken in, like, 1938." I laughed but his witticism did hit home an important point. This family suffered because in the 1950s, there was nothing that could be done for PKD. I mean, that's our party line now--no treatment, no cure--but that's not entirely accurate. Dialysis is readily available for anybody who wants it and needs it, and although I don't know the specifics of how insurance covers dialysis (yet), I know that nobody dies because a machine isn't available. Such was not the case when this family was trying to figure out how to beat the crapshoot of their genetics.
I'm at the part in the book where the author, the one sister of 3 who did not inherit PKD, is getting educated on being a living donor for her sister, a woman who is rapidly declining on dialysis. She's freaking out, and, well, I get that. My dad mentioned that he figured I already knew the horrors of kidney donation, and I told him I spent a difficult evening with Google once. I haven't really done much research since that one terrifying evening, and I what I know I've gleaned from the one PKD Foundation Conference I went to, 5 year ago, and my discussions with other PKD patients who have gotten transplants. So I know some hard stuff.
But I also know that even if research into PKD hasn't given us very much in terms of treatment options yet, kidney transplants are getting better every day. Dr. Perrone said (5 years ago at that afore-mentioned attended PKD Conference) that donation is easier, as they can now remove kidneys laprascopically (I have no idea how to spell that, but you get my drift), so recovery is faster and safer. Also, whereas Dr. Perrone also said that removing polycystic kidneys is a big deal and is hardly ever done, the University of Maryland is reporting success with bilateral nephrectomies for PKD patients.
I don't know if that is good news, but it sure sounds impressive. And I know that I would love to have these lumpy kidneys gone. They are totally messing with my plans for washboard abs.
(You know, because if it wasn't for PKD, I would TOTALLY have a six pack. Washboard all the way baby.)
(Why are you looking at me like that? It's totally my kidney's fault I'm not ripped. Excuse me while I go have a cookie.)
So if anything, this book has taught me that while the progress looks slow, we've actually come a long way. And my heart breaks for her family, having to struggle with a disease in a time when options were painful and few, and awareness of the disease was next to zero. What a lonely fight.