Rapamycin PKD trial

So I got a message from a nurse at the Cleveland Clinic working with the Rapamycin PKD trial. Of course, I told her I was still interested. In response, she wanted some additional information. I suspect the only important piece of information for her was my creatinine level, but she threw in questions about whether other family members had PKD or other serious illnesses. I figured, with a 4.1 creatinine, I'd be a perfect candidate. It's obvious my PKD is progressing so wouldn't I be a perfect candidate for a trial to halt the progression of cyst growth? Also, it does run in my family. My dad's kidneys failed in his late 30s and one of my siblings has PKD (non symptomatic -- lucky! (think Napoleon Dynamite.) Her very quick response said "Thank you for your response. Unfortunately your creatinine is too high.
I will keep your name should any other study begins." Too high? How is that supposed to make me feel? Maybe somebody isn't being straight with me. Maybe this damn illness is more advanced than I imagine. I feel fine. I feel great. I've never felt better in my life. I work out regularly and take good care of myself. Really, I just don't know what to think. I wonder what the max creatinine count is that they'll accept? What if the trial had taken place last year when I was still in the 3-4 range? Hell, that's a waste of my time to consider. It isn't last year after all, it's this year and I'm fucked out of that trial. Damn this genetic disorder. Damn my parents for not knowing this ran in the family and not having children. Well, okay, don't damn my parents. I could detele that and none of you all would know that I said such an awful thing, but there it is. I'm not taking it back. That's how I actually feel sometimes. What the use in knowing that I have this damn disease if I can't to anything to prevent it? Does all the working out and being a vegetarian and cutting back on caffeine make any difference at ALL? Does knowing from an early age that I have PKD increase the likelihood that I'll have kidney failure? I mean, you read about those studies concerning stress and illness. Do the negative thoughts and fears related to knowing have an impact on the progression of the disease? It would be different if heart disease ran in my family -- you can do something about that to increase your chances of a long, healthy life. But PKD? You really can't do much.

One good thing is that I chose not to have children. That decision was not largely due to the PKD, but that was a factor. Also, my sibling with PKD didn't have kids. At least we stopped the defective gene. Hopefully, my cousins don't also have it. Most of them are my age or older and there have been no signs of the illness thus far.