Talked to our doctor today

[Sydnee]

for many years I never wanted to find out whether any of my kids have PKD. I found out when I was 14, which meant I could never get life or health insurance. I have $30,000 life insurance through Ed's work that is the only amount we could get without those questions (I was lucky to get it).  I also have health insurance through his work. 

Insurance companies think of us as walking death traps, or sink holes. I didn't want to keep my kids from getting insurance. There hasn't been anything to stop/slow the progression of PKD (other than BP control, which we do check the kids) so I figured what is the point. RIGHT

Today at Ed's nephrologist appointment at the dialysis center I asked, " Can you diagnose my kids without it ending up on their chart?"

He responded " the short response is no....." "I have a ultrasound wand in my office that I trained on in 1995, we could try it out on the kids" pause "LCCC has a ultrasound program that is always looking for test subjects, no dr ever looks at the ultrasounds" the conversation ended with him saying, "Bring one of the kids to your next appointment we will decide what to do then."

I decided that it's probably better for the kids, Ed and I to know so they can make plans for their future. But better if insurance doesn't know.     

[willowtreewren]

Ed's neph sounds like a good human! 

We had to deal with that dilemma with our daughter. She took on the issue as an adult and got herself tested because she wanted to donate a kidney to her dad. Unfortunately she discovered that she has PKD and polycystic liver, too. Sigh.

Aleta

[smcd23]

Can you give your doctor a big hug for me? I love that he is a human being (and I've found a lot of nephs are - Tony's neph used to see him for free when he had no insurance, like didn't even bill him)

I also think it's really important that you have piece of mind.

[Jean]

Yes, by all means, bring them with you next time you go. When I was first diagnosed, they told me my kidneys were covered with cysts. Of course I had to learn here about polyCYSTIC, and when I did, I nade an extra apt. with the neph to discuss this. He said, oh, no, not polysystic. I was so relieved I couldnt even believe it.

[Deanne]

Win-win! Have you considered getting long-term term insurance policies on your kids while they're still young/before they're diagnosed? I was diagnosed as a 9-year-old and I remember my parents trying several times trying to get life insurance on me when I was a teenager. Insurance companies wouldn't touch me. I've been careful to stay employed in the corporate world where they can't disqualify me for health insurance due to pre-existing conditions and they also provide a minimal amount of life insurance.

I hope you get great news at your next appointment.