The PKD Damper

I'm not sure where to begin here. I guess we already know that I get scared sometimes. We already know that I'm having a couple of problems and that I am only in stage 1 of kidney failure. We already know that I worry too much about aneurysms (more so now that I've remembered I am heterozygous for blood clotting factor 5 Leiden). We don't know the progression rate and thus we can't make any estimates.

So, there we are. Anyway, in my free time I like to plan and scrutinize, re-plan, and polish. Most often the plans revolve around my future. But I've realized that it is very difficult to plan a future with so many unknowns ahead.

I don't know how bad it will get. I don't know how much pain I'll be in. I don't know if I'll have the energy or the constitution to work. I don't know if I'll be able to have kids. I don't know if I'll be able to have more than one if at all. I don't know if I want to take prescription pain killers. I don't know if I would even want a kidney transplant if I needed one. I don't really know a lot of things and, so far, neither does anyone else.

So, because I don't know these things, I don't know how to go on with my life! I do NOT want to waste my time. I am also hesitant to waste money...so I am unsure how to continue my education. All I know is that I want to continue it. I don't know if I'll be able to do a dream job anymore or if it would even happen with a degree. I would still love to have a bachelors in community health, but would it be worth it to get a degree if I can't work?

But there is the possibility that the pain will never get worse. There is a 50% chance I won't need a kidney transplant ever. The problem is that I can't know that until next year maybe (after getting another CT scan and comparing the progression), or 10 to 30 years from now (when kidneys generally need to be transplanted in PKD people).

It's just weird. Most people, even me up until July, have at least some idea of how their life is going to go. I really have no clue at this point. I could just do what I want and live for the moment, but I'm not that irresponsible. I don't want to spend my life paying for making rash decisions. So...that's what I've been thinking about. Also, google PKD belly. It's frightening.