PKD Complaints vol.100034

*Another PKD post.

Stop me if I've said this before. This morning, when I had five seconds to think of nothing, my brain decided on PKD. It just started making calculations for kidney growth. 5% every year. People generally get them out when they reach 32cm (maybe more, maybe less).

I have about 25 years, barring earlier kidney failure, a ruptured brain aneurysm, or heart failure (no idea, apx 10% chance, and 50% chance respectively).

At that point, unless something drastic happens, I'm planning to let nature take it's course.

As you can imagine, this doesn't sit well, but not for the reasons you think. The truth is, I'm relieved I can have some idea of how I'll die. Anything could happen, but in case it doesn't, I generally know what to expect. However, planning my life has proven difficult. I always make plans. They almost never come through, but it doesn't stop me. I'm learning to let go. It's hard to decide whether or not to have kids. I know Steve wants them, but I only have until 30, and I may not be ready before then.

I'm not sure how I'll feel about passing PKD on. I don't know how big of a deal it is yet. I don't know what I'll have to say when my kid(s) will pressure me to get help. They'll say I'm giving up if I don't seek a transplant or dialysis. I don't want that. I don't even want them to know I have it. I don't want to make them worry. I guess that's one thing I know. I never want them to find out I have it. Maybe I could ask them some vague hypothetical question about "a friend" who is wondering whether or not to tell her kids...

But what if I die before I plan to? How could I leave Stephen with a kid to raise? He/she might be in her late teens or early 20's by the time my kidneys fail. Or what if I have a heart attack at 40, like my dream shaman woman said? How could I do that to Stephen?

It's almost certain I'll get pre-eclampsia with my child(ren). It's deadly, but many women come back from it fine. But with PKD, it's almost certain the high blood pressure will stay. High blood pressure = faster kidney failure. I'll miss Stephen. So I should die sooner so I can leave him with a child to raise? A child who could grow up to hate me for having him/her? I've seen it in the support groups. I don't want that.

I really don't want to be a homemaker, but many of us have to retire in our 30's. How could I work on dialysis? I want to work...or at least volunteer a lot. What kind of life can I have with that? Lugging a machine around, or having to go to the hospital multiple times a week if not multiple times a day??? I don't want that. I doubt I'd even be eligible since my veins are so small.

But then there is the pressure to be an inspiration story. It sounds stupid, but you almost have to do it. "Healthy" people can just die and be fine, but you have an ailment. You have to do a lot of things or you're letting your illness control your life/beat you. Like...I feel obligated to donate my body to science now.

Anyway...this has been another ramble from yours truly.