Polycystic Kidney Disease (PKD) Support Group

Hi, I am new to this too. My daughter was told she had PKD and to have the rest of her family members tested. After having been tested, plus my sister, we both have it. Since then I have done a whole bunch of research. I have found that my mother as well as her 4 sisters and 1 brother had it. They are all passed away. All my counsins have it. It seems to be very common within the family. I have also done futher research and found that My grandfather, Arthur Kimball must have had it. He had a great deal of trouble with this type of problem. I even went further and found that it is a disease that is not uncommon within the Mormon community in southern Idaho. My great-great grandmother was the 23rd wife of Heber C. Kimball. That is as far as I was able to get in my research.

I met with my kidney doctor last week and found out the do's and don't's and what to expect. He is one of 8 doctors in the US that has a fair amount of knowledge about this disease. Anyway, he made the comment that this is a disease somewhat common in the LDS communities. I was surprised to say the least when he said that.

Anyway, I will met with his in 3 months to found out how I am doing. Surely changed my diet and how to treat the high blood pressure. What a drag..... Sandy

I found out I had it when I was 19 because my mother had visited the gynecologist and he felt the size of her abdomen and suspected PKD. She was tested and then I was tested.

My sister also has the disease and she has 2 young kids. Her doctor said NOT to have them tested because they will then have a "pre-existing condition" which can hurt their ability to be insured if they have a lapse of coverage in the future. but she knows there is a possibility that they have it so she is emphasizing healthy habits with them. There isn't too much you can do about it as a young child so whether to test is a personal decison.

No one elese in our family past or present appears to have the disease, so my mom was probably a case of "sponatneous mutation" where a person develops the disease through a genetic mutation, not inheritance.

My consultant also recommended not having the children tested, for the same reason. I'm just wondering how many end up finding out anyway, because they have problems or have scans etc for other reasons and find out incidentally. Also, how soon did people realise that a parent might have passed on the disease to them and how did they deal with that?

PKD has always been all over my family. It was in both of my grandparents' families...isn't that something?

So family history with us is very scary.

I'm the youngest PKD patient at my clinic and I'm in a big city AND one of the best kidney clinics in this state. It's crazy.

Basically my mother got me and my siblings tested when I was around 7 by getting an ultrasound. 2 of the 4 of us had cysts at the time. My other sister has since been diagnosed. The worse off cyst wise of all of us is me and my younger brother who is 15. He's symptom free for now. I'm the only one with issues.

My mother's function is starting to decline and she has high blood pressure but she really is not the most positive person in the world and really doesn't care too much to be honest with you. She doesn't even see a nephrologist.

Everybody's different in how they handle things...it really is a personal choice. I was symptom free until 2 years ago. I grew up around Dialysis and was familiar with kidney transplants and the terminology and things like that so I had a good idea what was going on. I was also always told that you can live your whole life with no problems sometime. Which is proving true with other family members. And also, Grandpa got a transplant back in 94 and is doing very well. Other family members weren't so lucky but that is just the way life goes.

I was blessed with a positive attitude so that is what keeps me going....in the end, it's all in how you would like to handle things with your family and in what you decide is best for your children. Doctors can advise you too, I'm sure. :)

And as far as dealing with anything in life...

everyone's different.

I don't blame my parents for having me. And I'm sure my mother doesn't blame hers for having her. I've made a personal decision not to have children of my own but that is just me.

Life happens. It's a reality and often times it's not a pleasant one but we get by. We do what we have to do no matter how hard it is.

*hugs*

In the end, you'll know what to do. You always do, right? ;)

Thanks for all your replies everyone. We'll deal with things as they arise and do what seems best at the time. Just wanted to hear about others' experiences to help me along the way. Any other comments welcome.

I think I mutated this on my own. My Dad got tested and he doesn't have it, my mom is getting tested soon. No one else in the family appears to have had it. I have a 6 yr. old son whom I know has a 50/50 chance of having PKD> My Neph said he is too young to get tested. I know if I really wanted him too I could get it done but I think he is too young to subjected and wouldn't really understand. I didn't find out unitl I was 46 and it was by total accident!

My husband has the disease and we have one son who is 9. Due to life and health insurance enrollment (pre-existing) and such, we won't have him tested. We haven't discussed with him or his sister.

However, when you have smart children like my daughter-15, it can come up. Luckily for me, my daughter and I were alone in the car when she mentioned that her brother could possibly have it. I confirmed her suspicion and discussed it all with her asking not to tell my him. We will when the time is right!

Currently we are dealing with an impending kidney need. Later we will deal with the "what if" questions. My motto currently is "one bridge at a time."

I hope that helps!

My mom was recently diagnosed with PKD and I'm planning on getting tested this summer. I have been researching it and I read that Congress recently passed a bill saying that people with pre-existing genetic issues can't be discriminated against. As I understood, basically insurance companies can't penalize us for our genetics, even if we know about them.

This was the only thing holding me back from getting tested. I was also wondering what kind of tests they do?

Unfortunately there's been no such ruling here in the UK. I was diagnosed with an ultrasound scan, which shows the cysts on the kidneys and any other organs affected. I beleieve that you can have genetic testing, which involves blood tests, but there's no need if you already have the cysts. Good luck.