A little heavy for a blog entry, huh? I post my share of light-hearted stuff, so bear with me.
On Sunday, I posted about it being DonateLife week, but didn’t really explain why I support it. My friends called me on it. The word ‘gutless’ may have been used. Lovingly, of course.
So here goes. I’d like to think that I’d support DonateLife week anyway, but the main reason I support it is because organ donation has affected my family, and will affect me directly in the future.
I have polycystic kidney disease (PKD). Boohoo, sniff, woe is me. I’m not saying this for sympathy, but to set the scene. It doesn’t make me special: in fact, according to trusted information source Wikipedia, PKD is the most common life-threatening genetic disease, affecting an estimated 12.5 million people worldwide. And, amazingly, Wikiworld even manages to provide a source for this figure, so it must be true. At least, it was in 2004.
There are lots of technical explanations of the disease out there, but here’s my attempt in layman’s terms: I have cysts on my kidneys. My kidneys will continue to grow cysts. There are many related side effects which are fun enough to deal with (including high blood pressure and the development of cranial aneurysms), but the most obvious impact is that these cysts impair my kidney function, and as they continue to form and grow, my kidney function will become progressively worse. At some stage, I will probably need dialysis to aid in kidney function. And at some point, my kidneys will fail me completely, and I will need a new one in order to survive.
I’ve known this for quite a while and am okay with it. My family and friends are amazingly supportive, and I’ve even had a few kidney offers from them. I’ve always thought that I couldn’t take a kidney from someone I know and love. But one friend in particular hasn’t just offered, but talks and acts as if the deal is done. She is adamant that I will have her kidney.
She travels the world, and ends every tale of her travels with, “but don’t worry, my kidneys are still good.” When I’m exhausted and having a sook about how tired my assorted medications make me, she taps her lower back and says, “I’m ready, just tell me when!” She often asks me which kidney I’d prefer. “Right or left, Emmo, your choice.” And when I mention that Cameron has also offered his kidney, she pfffffffts. “Pffffffft, you can’t both go through the surgery at the same time. You have a family.”
I usually wave these comments off. But the more I think about, the worse the alternative looks, and not just for me. If I refuse the offer of a kidney from a dear friend who is genuine and selfless in her offer, then am I sending a message to the universe that I’m hoping someone who happens to be a match for me will die (and happen to be an organ donor)? And even if I don’t believe that my need caused some cosmic butterfly effect that resulted in the death of a stranger, what about the next person on the donor list who missed out on the kidney I ended up with because I was too proud to accept the best gift someone could give me?
And that’s assuming I ever actually make it anywhere near the top of the list myself.
I used to be certain I’d say no, but now I’m not so sure. Of course, even if I say okay, let’s give it a go, there are lots of things that can stop us. The odds are definitely against my friend being a match for me. But I have to make the decision as to whether we will test the feasibility.
This is something I don’t have to decide now, or even soon. But the time gets closer every day.
DonateLife week is about prompting discussion of organ donation, with a focus on registering as an organ donor and letting your family know your wishes. It’s not about living donation.
So why support it? Because not everyone has a friend who is adamant that they will give you a kidney. And not everyone has a condition affecting an organ that can be received from a living donor.
Sorry. Heavy day. Hopefully I learn something light and fluffy tomorrow.
Has organ donation affected you or your family? Do you have a donation story to share?