Monday, November 5, 2007
Do I have it?
Sometimes I wonder if I have inherited PKD. There is a 50% chance that I have it. I also have a brother, there is a 50% chance he has it. We haven't been tested yet. We are both in our twenties. We both did volunteer to donate to our dad but they decided to go forward with a third donor, because of our family history of the disease. We show no symptoms now. I guess for insurance purposes you don't want to know if you have it or not until you are settled in a stable job and have life/health insurances. Or maybe they charge more? I don't know. Sometimes if I have a weird pain in my back, I think it could be a cyst growing. Then I think I am obsessing. I try to eat healty and drink lots of water. I already ready watch my sodium and protein intake, just in case. I also read about any pkd material I can get my hands on.
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3 comments:
Hello, B.
My wife has PKD, and I have three kids (12, 3 and 3) and often wonder if any of them have PKD. But, concerns about hindering their future insurability keeps me from considering any sort of testing to find out.
Personally, I think you are doing all of the right things - eating healthy, monitoring yourself, and staying informed. Until they come up with some real treatment options to prevent cyst growth (which may indeed be on the horizon), that's pretty much all you can do anyway.
Thanks for blogging about PKD! Putting your story out there for people to read will hopefully help raise awareness of this disease, which will lead to more government funding and more donations. All of which will hopefully lead to some good treatment options in the near future, should you, your brother or my kids actually get diagnosed with PKD someday.
I keep a list of links to PKD-related blogs on my blog. Hope you don't mind if I add yours to my list.
Thanks so much for commenting. I am new at this and I just learned how to respond. I am excited to have my first comment! Your response has encouraged me. Please do add me to your blog list. I will continue to share. Thanks again!
My sisters and I were tested for PKD when we were kids because that's when they discovered my Dad had it. I can tell you for sure that early diagnosis does have an impact on your life decisions. My mother carried health insurance for me until it became much too expensive. I was in college and I decided to get a job with the state so I could be covered by a group health insurance plan. My employment options are limited by this requirement and, as such, I have continued to work for the state in academia.
Additionally, my husband and I have been unable to get life insurance coverage for me. The insurance agents told us, contact us again after she turns 40. If my kidneys are still working after 40, the statistics apparently improve enough that they would be willing to consider covering me.
I see now why you don't want to get checked. Good luck to you and your father.
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