Congenital Heart Condition

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Congenital Heart Condition
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Do you have limitations due to your CHD? How do you cope with them?

I’ve always been limited on the type of exercise I’ve been able to do. I also can’t deal with the heat at all. I’ve instead found other ways to exercise that was easier on my body. I also tend to avoid the heat. Which can be hard living in Southern California. But I have to take precautions to make sure I don’t get overheated. What kind of limitations do you have due to your CHD? #CongenitalHeartDefectDisease #CongenitalHeartCondition #adultchdwarriors


Realization #adultchdwarriors

Yesterday in discussing life and health issues with a friend they used the term “defective” - it took me a bit but I realized that is the exact term to describe the feeling that has been overwhelming me. I’ve had 4 open heart surgeries, 2 of them in my adult life. I have never been remotely phased until this year- 2020. A year after my most recent. I’m apparently still adjusting to a new normal but with everything that has occurred this year- I just feel defective. Any era you can name- I feel defective. #CongenitalHeartCondition #CongenitalHeartDefectDisease #adultchdwarrior

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Triple Zebra- #LongQTsyndrome #HEDS #SolarUrticaria

Happy #RareDiseaseDay to all of my fellow zebras (Rare Disease patients). This year, I’m raising awareness for the 3 rare diseases that affect me every day. I live with a rare, genetic heart condition called Long QT Syndrome that places me at high risk of sudden cardiac arrest. Because of this, I have a defibrillator/pacemaker combination device implanted to shock my heart back into the proper rhythm when this occurs. Only less than 1% of those with the already rare diagnosis of Long QT Syndrome will have Long QT Type 5 like my family. Our specific gene mutation has also never been seen before. I also have Solar Urticaria, a rare severe allergy to ultraviolet light and sunlight. I’m allergic to UVA, UVB, and some types of visible light such as black light. I still react through windows, in the shade, and through clouds. It severely limits my life, essentially forcing me to “live in the dark”. There are very limited treatment options. Finally, I live with Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder making my joints come out of place and be very unstable. It also causes me to be in severe chronic pain 24/7 in my joints. I fall easily. I cannot walk far and use a cane, knee braces, ankle braces, wrist braces, and a jaw splint to try to support my joints. If I have to walk far, I require a wheelchair or mobility scooter. I am #RareAndMighty
#EhlersDanlosSyndrome #ChronicPain #CongenitalHeartCondition #HeartCondition #HeartDefect #Arrhythmia #ChronicIllness #RareDisease


Has anyone had a heart valve replacement via Catheter instead of open heart surgery?

I have had 3 open heart surgeries and am now in my 20's and will be having a melody valve replacement by Catheter at Stanford University. I'm nervous since this form of heart surgery has only been around for a decade. Any insight would be great.
#ChronicIllness #CongenitalHeartCondition #valvereplacement