Polycystic Kidney Disease (PKD) Support Group

I was diagnosed at 21, after having my first child. I have always known about PKD because my maternal grandmother went on dialysis at the age of 35, so my whole life she had to go to the "doctor" three days a week. Plus, every time she got a new graft, she would let us kids feel it "purr". My mom knew that she had PKD at the age of 29 but her neph told her she'd be an old lady before she had any problems. That was before they new about PKD1 vs PKD2. We have PKD1 which has an earlier onset of issues and usually ends with renal failure in the fifth or sixth decade of life. My mom was 52 when she found out her kidneys were not working "perfectly" as she thought. She had never been to a nephrologist and never followed up with a regular doctor. Needless to say, within 7 years she was on dialysis. More importantly though, it was discovered that she had developed several aneurysms, which are more common in patients with PKD.
With all that said, I have been very dedicated to taking care of my PKD and I've kept my girls informed for as long as I can remember. This disease can have long term consequences that could manifest at any time in your life and I don't think it's fair for the kids to be caught off guard or to see or hear something that they don't understand, so I've always been honest with the girls. This could potentially affect them in a very personal way, not just with their mom and grandma and I don't want them to be afraid or feel that I withheld something from them.
On the bright side, my oldest, who's 21, just had an ultrasound and had no cysts. That is a very positive sign for her because our family history is a very aggressive course of PKD. We all have had cysts at her age, so I'm very happy.
I also wanted to concurr with the new law that says it's unlawful to discriminate agianst genetic disease by insurance companies. It's a personal decision for each family to make and insurance issues shouldn't be running the show.
Tami

Thanks! If I'm lucky enough to not have the gene, I'm going to see about giving my mom a kidney.

@ Tami--

I'm so glad you're choosing to keep your kids in the know. I didn't know anything about my family history until my grandma passed. She'd been sick for years, (I don't even know how long), but I didn't know anything about it until her last night. I was pretty upset I had to find out that way, but at least I know now.

My family has also been dealing with PKD for a long time. I was diagnosed at 17. The insurance companies SAY they can insure you even with a pre-existing condition, however they can also raise your premiums so high it becomes impossible to pay (my last premium was &1500.00 month, olkay who can afford that! I have made payments to Dr's and hospitals since this started. As far as dialysis and transplants, Medicare usually steps in just when you can't pay another dime... after a transplant you have three years of coverage through Medicare. I have a sister diagnosed with PKD without insurance. Its really sad that we have to decide if our problems ward a Dr visit because we are without any coverage.
I have three children with a 50% chance of having PKD also. We decided not to get them tested until they have good job with insurance coverage, because if we were to get them tested today, there will never be coverage! However, this disease is survivable! Dialysis is not the funnist thing you will ever go through but you can survive it! I have had my transplant now for 10 months and am doing better than I have in many years! Hang in there all of you! Try real hard to stay positive and keep your friends and family close by. They can help you more than you know!
Good luck to all of you!

*hugs positiveattitude* thank you for sharing your inspiring story with us :)

My mom died of it when she was 42 but she was sick from it for over a decade before that so i knew about it since i was a child. Her mom died of it when my mom was 6. In high school i took a hit playing football and had blood in my urine that night so i knew i might have it since then but either they didn't find anything (no ultra scan) or they didn't tell me about it. When i was in my late 30s early 40s i had an ultra scan and it showed up to say the least. Since my 20s i was having the pain from it and just didn't know what it was.
i don't have any children but if i did i would tell them when they were 20 something so they would know. Before that, at least in my case, it didn't have any effect. Of coarse even if i had little children now they would know because of my condition.