Hypoplastic Left Heart Syndrome

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Hypoplastic Left Heart Syndrome
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  • About Hypoplastic Left Heart Syndrome
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    I'm new here!

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

    #MightyTogether

    #HypoplasticLeftHeartSyndrome

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    Do you celebrate Surgery Anniversaries? #Disability

    Sometimes surgeries can be a source of trauma but other times surgeries are life saving and well met. Do you celebrate them or let the days pass like any other?

    #adultchdwarriors #AmericanHeartAssociation #CongenitalHeartCondition #CongenitalHeartDefectDisease #chdwarriors #ChronicIllness #OpenHeartSurgery #HeartTransplant #PosturalOrthostaticTachycardiaSyndrome #TranspositionOfTheGreatArteries #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #RareDisease

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    Hypoplastic Left Heart Syndrome (HLHS)

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

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    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

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    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