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Several websites discuss PKD from a medical perspective, but it was through the pkdcure.org website that I found other families surviving and dealing with the daily emotions that come with finding out that you have an incurable disease such as PKD. Realizing the feelings I felt were similar to those of other members helped me realize those feelings were normal. I hope this blog will provide an outlet, and that it will provide others with the comfort of realizing they are not alone.
Me with my family
My daughter Amanda
About Me
- New to PKD
- My journey in learning about and living with Polycystic Kidney Disease.
2 comments:
Sorry to hear this, Margaret. The good news, I suppose, is that if it took a genetic test to determine you have PKD, then the cysts are progressing at a slow enough rate that they aren't interfering with your life at this point. So, do your best to stay healthy, and let's hope and pray that the progress in developing effective treatments is faster than the progress of the disease, and (as the PKD Foundation's saying goes) you and your daughter "never have to suffer the full effects of PKD".
Thanks Bob.
Yes, at this point, neither my daughter or I are at any serious risk. My daughter just turned 16 and has numerous cysts that have caused enough pain to warrant an emergency room visit, but so far her renal function and blood pressure are good. She has a nephrology appointment on December 10, and hopefully all is still well.
For myself, I have actually had a variety of health issues in the last 10 years that I now realize were probably related to the PKD. I have not seen a doctor for a regular physical and it has been a few years since I have had regular blood work. Oddly enough, my doctor never had a face to face with me through the genetic testing. Children's Hospital asked him to arrange the testing and his nurse called me to pickup the lab slip. I guess I will make a point to schedule that physical after the holidays.
After reading several of the blogs on the internet and the PKD Foundations website, I am Thankful that the disease has obviously moved at a much slower rate than it has for others.
Happy Thanksgiving to you and your family!
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