How do you tell your family?

[Mentu]

This is my first post in this forum. Yesterday, my surgeon said he is pretty sure my AV is bicuspid. He will confirm in three weeks when he replaces my valve. I then mentioned my Uncle Bob who has had 2 AVR in the last 20 years and my Uncle Paul who died suddenly in his mid 50s without any history of arterial heart disease. As well, there is my younger brother who has a heart murmur. Dr Spann said that this is just the type of distribution that one would expect to see and that there are probably more cases that have not been recognized. If the valve is, indeed, bicuspid, how do you tell all of your cousins (and I have a lot of them) that they need to have their hearts checked for a potentially fatal genetic defect without causing an uproar? My first thought is that I should enlist the assistance of my Uncle Harold who has become the family center. I would appreciate hearing your suggestions.

 

[KAJ]

I had to to the same thing with my family. I simply told them the diagnosis, and that more than likely, it is a hereditary disease. Encourage them to be checked. Any doctor worth their salt will take a patient's family history seriously. Do you have an aoritc aneurism?

My twin brother did run into some problems with trying to get a doctor to take him seriously depite my hisltory. He has been told he does not have one. However, I don't think a proper evaluation was conducted. All you can do is tell your family. The rest is up to them.

Karl

 

[knoxbone09]

I don't understand why people get upset if they're told they should get checked for a potentially fatal--if untreated--gentic disease. If you get checked and if you don't have it, well that's great, and if you do have it, you'll know and can address it without any futher complications. I just don't understand the stubborness and ingorance that would lead someone to get angry over prudent medical advice.

 

[Eva]

I agree with karl. Just tell your diagnosis and what you shall be going through to have it fixed and emphasize that this, confirmed by doctors, is hereditary!! And leave it up to them ... if they ask questions, you answer them!

 

[BAVD John]

Yep, same here. You must be straight up with them and encourage them to get themselves checked out. I'm the oldest of 4 males and 3 of us have BAVD. Myself and youngest brother have had our replacement. My brother just 18 months younger than me has his next echo this November. I have 4 children between the ages of 18 and 24, two have had echo's and check out just fine, the other two will have their echo's next year. I'm sure your cousins would thank you for your help rather than causing an up roar. Remember, this condition can be fixed and I plan on being around for a long time.