Hypoplastic Left Heart Syndrome

Join the Conversation on
Hypoplastic Left Heart Syndrome
535 people
0 stories
161 posts
  • About Hypoplastic Left Heart Syndrome
  • Explore Our Newsletters
  • What's New in Hypoplastic Left Heart Syndrome
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    I'm new here!

    Hi, my name is S2002. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #HypoplasticLeftHeartSyndrome

    2 comments
    Post
    See full photo
    Post
    See full photo

    Hypoplastic Left Heart Syndrome (HLHS)

    Great diagram from Children’s Heart Foundation.
    Anyone have HLHS?

    Post
    See full photo

    How did you feel about your transition of care from a pediatric cardiologist to an adult cardiologist? #CongenitalHeartDefectDisease

    Did you have to transition to an adult specialist cardiologist once you turned 18? Or were you able to stay with a pediatric specialist cardiologist? I had the worst time of it. My parents had to constantly fight with insurances to get me with doctors that understood my condition. Then when I turned 26 and had to go on my own insurance and the insurance I was with and doctor I was put with was extremely negligent with me for four years. By the time I finally was able to get on a different insurance and doctor I was in bad shape and almost died. I’m lucky now to be with an adult specialist cardiologist.
    Anyone had issues with their care or gaps in their care? Most adults with congenital heart defects don’t get the care they need.

    #adultchdwarriors #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #HypoplasticRightHeartSyndrome #PosturalOrthostaticTachycardiaSyndrome #Disability #RareDisease #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries

    2 comments
    Post
    See full photo

    6 facts about CHD

    Did you know some of these CHD facts? I was thinking of starting a series of different heart conditions and some facts about them. What would everyone like to see? What is some information you would like to know or would like others to know more about?

    #CongenitalHeartDefectDisease #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #TranspositionOfTheGreatArteries #chdwarriors #adultchdwarriors

    1 comment