Gotta have faith
Do you ever get the overwhelming sense that your world is spinning out of control and you have absolutely no way to slow it down or make it stop?
Daddy’s visit to UAB yesterday didn’t bring great news. It seems as though his kidney function has dropped again, meaning our time to find a donor match is getting shorter. The doctor also let him know that without a transplant, his life expectancy on dialysis is about five years. Which also happens to be the average wait time on the donor list.
Even though I’ve been advised against it, I’ve decided to schedule testing to see if I inherited PKD – with the sole intent of donating a kidney to Daddy if I test negative for the disease. From my understanding, the first test will be a simple ultrasound to see if there are already cysts present. If so, obviously I have PKD and I won’t be able to give my dad an organ. However, if they don’t see cysts, it could because I’m young and the disease has not progressed very far. To rule that out, a genetic test will have to be done, which involves sending blood work to one of the only two labs in the country currently capable of testing for PKD. Then we’ll wait. Eight weeks, I think. Which will be excruciating, I’m sure.
Best case scenario, the test will come back negative and I’ll set up lab work at UAB to ensure I’m a good match for my dad. Then, if my prayers are answered, Daddy will receive one of my healthy kidneys as soon as possible – which, considering all of the testing that has to take place in the process, will probably be well after the beginning of the year.
And because I overthink everything, I also have to brace myself for the worst. The initial ultrasound could show multiple cysts, making the genetic test unnecessary. If that’s the case, I’ll be a woman on a mission to find another donor for him.
Everyone keeps asking me if I’m okay with finding out. If I can handle it. If I want to know. Yes. Yes. And yes. Because there’s a 50 chance that I can help my dad, and that’s good enough for me. Will I be a nervous wreck waiting for the results? Probably.
I keep reminding myself that if the results are positive and I do have PKD, I’ve had it my whole life. It’s not like I’ll find out and BAM: suddenly I’m sick. Chances are, it will be several years before I start feeling the effects of the disease. And who knows? With the hard work of everyone involved with the PKD Foundation, there could be a cure or at least a viable treatment by then.
Anyway, to make a long story short, my family could really use your prayers right now. And please don’t forget to visit my page at http://www.pkdcure.org/heatheroquin.