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Postby Christina » Fri Jan 17, 2014 6:47 pm

As I know PKD is a genetic disease. Can it happen from other than being genetic. No one in my family has the disease or has had it in the past but they are telling me that it is pkd. When I questioned them they said it can be caused from Heart failure also. Any comments? Anyone?

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Postby VAPKD » Sat Jan 18, 2014 1:28 am

It's mostly a genetic disease, but it can occur randomly in people whose parents don't have the disease. The part about heart failure is a bit puzzling though. Did you have heart failure? I believe it's just a genetic mutation in non-hereditary cases.

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Postby Moderator » Mon Apr 14, 2014 3:38 am

This is a very good question that we get from time to time when someone is diagnosed with PKD but they are unaware of a family history of the disease. Here is some information taken from the Learn section of that answers the question, "How does a person get PKD?". Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception - having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

There are other health complications associated with having PKD. Here is some information taken from the Learn section of about cardiovascular complications. Cardiovascular complications include high blood pressure, cerebral aneurysms and mitral valve prolapse (MVP), a condition where the valve separating the top and the bottom of the left side of the heart does not close properly. Sometimes this causes blood to leak back to the top part of the heart. This is called regurgitation and can be heard as a heart murmur. MVP occurs in approximately 26% of the people who have ADPKD compared to 2%-3% of the general population. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion.
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Postby Guest » Thu Mar 31, 2016 7:56 am

I have two sisters with pkd, liver also. One has a kidney the size of a football. She also has hemochromatosis and has to be bled periodically. Blood bank won't take her blood, so it costs. Might be time to call the blood bank again.

The other sister had kidney blockage from grapefruit size cyst and had what was experimental or maybe early days drainage by a nephrologist; I think he had been with mayo before practicing in san antonio. He isn't taking new patients and won't see the other sister.

Of course, I'm talking second hand about their experiences and may have the history wrong.

My internist said, in our family, it probably is what he called the insulin gene, as I have trouble with insulin/diabetes, not old. We haven't had genetic testing. He said our families may have had it and that many people don't know, depending on other health issues. Cousin found out after a car accident with unexpected bleeding. Tests finally showed the impact caused the cysts to bleed. Good luck; take care.

We're currently looking for a good pkd experienced doctor/nephrologist taking new patients in Boerne San Antonio area. I would also like to hear from or know where to l



Postby Jean_George » Fri Apr 21, 2017 7:32 am

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