Welcome, not sure about words of wisdom, but after a while you just get used to it I suppose. Some people have no symptoms or major issues until they are well into middle age and while your daughters have a 50% chance of having it always remember they have 50%chance they don't so I try not to stress to much about something I cannot change. X

There's no guarantee that any of your daughters will have it. So keep that as a positive at least. I was diagnosed with it and none of my siblings or parents were for example, so it's not a given.

Hi there, welcome to the group. As the others have said, there's a 50% chance that your daughters will not have PKD. There's also at least a 50% chance that you will never need renal replacement therapy. If you live anticipating the worst you will just erode your quality of life now unnecessarily. Look after yourself, make healthy choices, encourage your daughters to do the same (we should all do this anyway) and play to win.

I was just diagnosed with PKD 5 weeks ago. My son, aged 16, will be tested for it next month. He is perfectly healthy now, fairly athletic, and generally strong. The way I see it, if the doctors tell him he has PKD, he will need to watch what he eats and drinks for the rest of his life. And that's advice which could save him from all manner of problems in the future.

My son was diagnosed with PKD 2 weeks ago. As his Mom, I was devastated! He just got married in June of last year. We didn't know of anyone with this disease. I'm 59 and my husband is 66. My husband went to the doctor today regarding his blood pressure. It was higher than normal and he takes meds. They did an ultrasound and he found out he has PKD! Shocked. His kidneys are functioning well and he has never had a problem with them. I have 2 daughters that are married. One has 2 children and the other wants children. I am so scared for them all. I don't think my grandchildren should be tested. I'm not sure if my kids should be tested. Is it ok to have children? My younger daughter wants kids so bad. She loves kids! I am so depressed!!

Your concern is understandable but don't panic. Your husband has reached the age of 66 with no problems and still has normal kidney function.. Ir's highly unlikely he will ever have kidney failure. He may well have PKD2 which tends to show symptoms 15-20 years later than PKD1 and so many with this type never really have any significant difficulties. This bodes very well for your children and grandchildren. Would it put you off having children if there was a history of heart problems aged 70+ in the family? There is no point testing children and even in adults there can be no definitive diagnosis until age 40 - there can be false negatives until then. Advise your family to make healthy choices and live your lives.

Chewit,

Thanks so much for the reassuring words. If my husband hasn't shown kidney loss at 66 you said he might have PKD 2, does this mean if my kids have it they would get the same kind?

I'm not able to concentrate on anything. I feel like I will never be happy again! I'm trying so hard to remain calm.

If your husband does have PKD2, this is the type your son will have. As a rough guide it's often said that family members have syptoms in common, though this is not always the case. If two people with the same genetic make up live very different lives, with one making very healthy choices and the other doing the opposite, the one making the healthy choices will fare better. Remember, too, that even for those who reach a point where their kidneys fail, modern medicine, particularly transplants, mean that they can still live a long and fulfilling life. What led to your son's diagnosis?

He was on a trip with his wife and wasn't feeling well. He went to emergency and they thought he was passing a kidney stone. The did an X-ray and then decided to do an ultrasound. He had no idea.

This is making me so sick. I went through menopause two years ago and started spotting after all of this news. My stomach is a mess. I have an appointment Monday to see why this is happening. I'm hoping its stress!

Hi there, your son may have had a cyst rupture. It doesn't mean anything, but can be painful. Strenuous activity can sometimes cause this. Has he had his kidney function checked?

Good luck with your appointment on Monday. Let us know how it goes.

So far his kidney function is fine. He will be tested once or twice a year just to keep track. Thanks!