Survival to adulthood is better because of improved fetal diagnoses and advances in medical and surgical techniques that have increased survival rate of those with CHDs!
#CongenitalHeartDefectDisease #adultchdwarriors #TetralogyOfFallot #DoubleinletLeftventricleHeartDefect #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries
#PosturalOrthostaticTachycardiaSyndrome #Disability #RareDisease
I’m happy to announce that my yearly cardiologist check up went well this year! My heart is functioning well and no need for pacemaker yet or even to clear any scar tissue around my stent. I still have complete a baseline stress test in June but other than that I’m done for this year. It’s wonderful news since my open heart surgery August 2019.
Now to focus on other aspects of my health and doctors appointments. I just did a head CT with contrast yesterday for my neurologist and I have my specialist Obgyn in June. I also have some other referrals to do as well. I’ve spent so long having my heart take first place over all other things that my overall health got pretty crappy. Not it’s time to find out answers and hopefully fix somethings.
Shirt from withhopeandgracellc
PIc ID - black and white photo of Amelia smiling with a shirt that says “beautifully mended by withhopeandgracellc
#CheerMeOn #adultchdwarriors #Disability #HeartConditions #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries #TetralogyOfFallot
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
I’m terrible with accepting my limitations. I feel like I always push myself to the limit and then I crash. I often think I know my body or that I know my limits but I often just push them a little too far. I’m also sometimes a bit annoyed by them. For awhile when I started to decline in health I hated that I couldn’t do what I was used to. Now that I’m starting to get better it’s still trial and error with figuring out my limits.
How do you feel about your limits? Do you push yourself over them? Do you accept them? Or do you struggle with them? #ChronicIllness #CongenitalHeartDefectDisease #adultchdwarriors #CongenitallyCorrectedTranspositionOfTheGreatArteries #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #Disability #RareDisease
I travel about an hour in a half to see my current cardiologist but I’ve traveled up to three hours to see a cardiologist before. It’s so hard to find cardiologist and get the appropriate care.
How far do you travel to see a cardiologist?
#CongenitalHeartDefectDisease #HeartDisease #ChronicIllness #adultchdwarriors #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries #TetralogyOfFallot #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome
I feel like this comes from many different parts of society. Doctors want to hear that either you are doing great or that you are feeling sick. There’s never an in between and when there is, it is almost as if they can’t comprehend that. You must be faking being ill or faking being well. I know from my personal experience lately since my open heart surgery last fall I’ve been in between. I know I’m doing so much better than before but I’m also not great. And that is hard for people to grasp.
#CongenitalHeartDefectDisease #HeartDisease #CongenitalHeartBlock #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries #HeartConditions #HeartAttack #ChronicIllness #Disability #TetralogyOfFallot #adultchdwarriors
I’m Amelia! I have Transposition of the Great Arteries with Mustard procedure still in place. I was born in the 80’s when it was still too risky to switch back the arteries. They have now decided as an adult to leave my mustard procedure as it is. I’ve had a total of 7 or so heart surgeries and 3 open heart. I just had my most recent open heart surgery in August.
I myself love to write. I’m a community leader and contributer for The Mighty and run my own blog and instagram page. I also work with high school kids who have disabilities as a paraeducator.
Introduce yourself and tell us a little about your heart journey and a bit about yourself.
#chdwarriors #CongenitalHeartDefectDisease #ChronicIllness #Disability #HeartDisease #adultchd #adultchdwarriors #TranspositionOfTheGreatArteries #HypoplasticRightHeartSyndrome #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #CongenitallyCorrectedTranspositionOfTheGreatArteries #mustardprocedure #senningprocedure #TricuspidAtresia
This Halloween was a bit hard because I had to dress my other two kids and take them trick-or-treating with out there youngest brother due to him passing away in August the hardest part was watching all these parents with there babies all dressed up cute and having so much joy with them and I was just there holding on to my memory of my COCO last year when I carved a pumpkin just for him ......... Coco was born with a rare chd called transposition of the great arteries and also had pulmonary hypertension he passed from right heart failure, and respiratory failure Coco story will alway be told by me #LLC #CongenitallyCorrectedTranspositionOfTheGreatArteries #Pulmonart hypertention #Kingcoco #Mommysangel #CongenitalHeartDefectDisease #chdawareness #Longlivecoco
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