taw01 Welcome to our kidney forums.
I also have PKD as did my mother. I have three children and still havent had them checked. I watch for signs and do blood work on them once a year. I'm concerned with the preexisting condition clause. My kids are 15, 17 and 20. My mother had it and we never knew until her autopsy when she passed away with a heart condition. She had no pain or kidney failure with hers but then she was young when she passed at 54.
Mine showed signs at 19 with kidney stones. After many years of stents and outragous pain we found out they needed to look inside of the kidneys upon my mothers death. Thats when they found hundreds of cysts which were pretty large.
Living with PKD has changed my life. As I have said in the past we all have to create a new normal. Our old lives are now a memory.
I'm so happy you found us. I knew of NO ONE who had PKD until I came to this site for my pain. Then they created the kidney forum and I know have a group of friends who understand what I go through instead of having to explain what it is.
A couple of my doctors in the past were lost when they heard PKD is wasn't something they knew anything about.
Please keep us updated on your family. We will always be here for all your needs.
Kidney Diseases and Disorders
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........