Hi, my name is DianBolling. I'm here because I have raised 3 sons with fragile X Syndrome Chrons and Hypoplastic Left Heart Syndrome.. I have started a YouTube channel called DontHackYourBoat and am looking for topics people want to learn about. Thanks!
#MightyTogether #Anxiety #Depression #Fibromyalgia #Migraine #AutismSpectrumDisorder #PTSD
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Hi, my name is S2002. I’m new to The Mighty and look forward to sharing my story.
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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Great diagram from Children’s Heart Foundation.
Anyone have HLHS?
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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