AHAASAKatie
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AHAASAKatie, March 9,  2020  9:45am EST

Young Adult Survivor Needs our Support

Please share support with this Tetralogy of Fallot patient, she is younger and needs our support.  If you want to research her condition, here is what we have regarding  Tetralogy of Fallot and what she is managing.

Thank you all for being such wonderful community members. Your words of kindness and support (regardless of the condition or situation) are what makes this community so strong. 

Best Katie

1 Reply
  • Kimsue
    Kimsue, May 29,  2020  4:56pm EST

    Hi Katie, I am new, too! You sound like my son, but with a different congenital heart defect.  His name is Michael and he is 25 yrs old.  He has Coartation of the Aorta and Bicuspid Valve Defect and he had a heart catherization/balloon antipathy at age 4 yrs.  He was told different symptoms to look for and get to the ER immediately.  Mike also has costrocondritis which is a muscular pain in chest.  He worries about the pains that started several years ago.  ER said it was his costrocondritis and anxieties.  He felt safer when we were with the Children Health Network.  But, he now goes to an adult cardilogist.  I feel so bad for him when he wakes up with chest pains and all we can do is take Aleve and use the heating pad.  He feels alone and that no one understands what it feels like to be 25 with lifetime heart defects.  If you, or anyone who can help, could let Mike know he is not alone and that there is support to help him get through the hard times.

    Thanks and Take Care

    Kim

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