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    • #22412
      Colleen Steele

      Do you worry about getting blindsided by your healthy child suddenly becoming sick or having something happen to them? I’ve had nightmares that while I was caring for my PH child, something horrible happened to my healthy child. Part of this I think is because my PH’er was born healthy. He wasn’t diagnosed until he was 8 years old so in the back of my mind I have worried that something is going to take me by surprise with my other son too.

      Have you experienced similar fears and if so, how to deal with them? Have you found a way to ease your mind when it starts racing with the, “what if’s”?

    • #22458
      V.R. Peterson

      I constantly worry about my healthy children. The doctor says my son has likely had CTEPH since he was a young child. What if it’s hereditary? They ran all the tests to see of it was hereditary or congenital, but what if it’s a gene that they don’t yet know about it? Yes, I wonder all the time — and now that my healthy children now have children of their own, I worry about my grandchildren.

    • #22479
      Colleen Steele

      @mamabear007 exactly! My son’s PH is idiopathic and my other son was tested and cleared. I worry about future grandchildren inheriting PH. I had this discussion with my “healthy” son recently and he said, “Mom, I was there when the doctor said we wouldn’t have to worry about that.” Well, I still do for the same reasons that you mentioned.

    • #22486
      Brittany Foster


      This is a really good topic! My mom definitely does worry about my sisters and other family members. I think because many of my heart conditions seemed to have been discovered later in my life , I know she is trying her best to NOT have others in my family go through the same struggles that I did. Because the underlying genetic condition runs in my mom’s side of the family, when someone is complaining of dizziness or heart type symptoms she immediately will tell them “make sure you mention that congenital heart disease runs in the family and get tested!” I know she is doing her part in spreading awareness and making sure to check all the boxes but it seems like that’s right where her mind goes to. I can understand why. Do you also find yourself relating to this?

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