Polycystic Kidney Disease (PKD) Support Group

I have several questions for you first.

You're 24 now, when were you diagnosed with PKD?
What was you're kidney function at diagnosis?
Your kidney function is now 59%. Was it because of the pregnancy?
Does your little girl have PKD?
Will the military cover any medical expenses caused by PKD?

If you don't already know, there is a 50% chance per pregnancy to pass on PKD to your child. I've read about a family of 7 children; 3 have it, 4 don't.

What country are you in? Canada has government run Medicare. US has HMOs. The difference being Canadians do not pay to go to the hospital. In the US, it's no money, no treatment. This is where you have the advantage being in the military. I'm not exactly sure, but does the military cover your medical expenses?

Maybe you could change over to an administrative role in the military rather than active duty. As PKD progresses, the kidneys expand making you look pregnant. Imagine doing military training and running while pregnant!

To tell the truth, the opinions of other people don't matter. Do what you want to do, because it's you who will have to live with your descisions.

Extra Info: Always carry printed information about PKD to the hospital, so as to smack those incompetent doctors in the head! I told a paramedic I have PKD. He said, "What's that? Never heard of it.".

I was diagnosed with PKD at 23 I was 12 wks pregnant. My mom had PKD and went through renal failure 5 years ago she received a transplant and that just failed recently and she is now on pertinel dialysis. I went to my Drs. appt yesterday and he said that he doesn't think I have PKD he thinks it is another disease but my mom and sister have it and I have been told that by 3 drs that I have it. He said he wants to do a biopsy but je said he doesn't want to because I have so many cysts and that he doesn't want to rupture them. I don't think he knew much about PKD he is more of dialysis Dr. But anyways I am in the Reserves and already do administrative work so it is only one weekend a month and 2 weeks in the summer. I just worry about the physical fitness part because it hurts when I run and do sit ups and push ups. I don't think I will be able to keep the standards of a PT test because of the pain. But we do live in the US and my husband is Active Duty so that pays for all of our medical. Thank goodness. My little girl we don't know if she has PKD they said we could do genetic testing but I don't want to know yet.

i am currently in renal failure and on dialysis, yesterday i went on a 29 mile bike ride up and down hills. My weight on Monday was 110.6 kilograms, today i was at 107.4 which means that i lost at least 6 lbs yesterday. They weigh you at dialysis before and after.
i tell you that to assure you that you can do things with this disease, many don't but i have found it helps keep the water gain in control and really helps with the pain. As you exercise your brean releases endorphins, your bodies natural pain killer. Hope that helps you some.