I can feel my cysts. Truly, I can, and truly, some days it just freaks me out a little.
It is especially noticeable in the morning, when my stomach is empty and I am lying on my back. Before I was diagnosed, I half joked with my husband that I thought I had a tumor on my liver. Either that, or there were aliens in my body. I would push on my sides and on the space directly below my diaphragm, and show him what I was talking about. He just thought I was crazy. Boy, does he feel guilty!
Now that I've seen everything on ultrasound, a few times actually , I know exactly where everything is, including my 10 cm cyst on my left kidney, and the 5 centimeter cyst on my right. Oh, and that tumor on my liver? Yup, another cyst, this one the size of a golf ball.
I'm not sure knowing really helps. Before, I could just sort of look at the lumps in my body and write them off as some unknown anomaly, or maybe nothing at all. If you don't know what's wrong, there could be nothing wrong. And life is easier if you think that nothing is wrong.
All of the women in my immediate family have been tested for PKD. None of them could stand the thought of living with a disease they didn't know about. None of them have any cysts.
Then there's the men--my father, who was only tested because my mother insisted, and my brothers, who haven't been tested and who really don't think much about it. Ironic, really, since I get it from my father, and one of my brothers has symptoms. Still, I understand their reluctance to be a part of it, to enter this world. It's much safer to believe that nothing is wrong. And my brother points out that he could lose his health and life insurance with a diagnosis like PKD, no small matters when you are the head of a family. He also says he doesn't care if he dies suddenly of renal failure, because his family will be well provided for with his current life insurance, and that he's probably worth more dead than alive. Sure, it sounds a little flippant, but all in all, he has a point.
Sometimes I wish I could pretend that nothing is wrong. At this point, PKD has not really drastically impacted my life more than a dramatic increase in doctor's appointments, medical vocabulary, health insurance premiums, and overall emotional stress. But I live with the knowledge that somebody like me has a 70% chance of needing a kidney transplant in the next 10 years. I've read a lot, maybe too much, and I know what is in store for me. So even though I feel fine, especially after starting a regular exercise routine and changing my eating habits, I will never be able to say, "I'm fine. There's nothing wrong with me", and really mean it.
I suppose what this all really means is that I TOTALLY need to go to Hawaii this year.