Hypoplastic Right Heart Syndrome

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

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

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 thought this was appropriate for our theme this week. How do you feel when people ask you about your scar? Do people ever point out your scar? What do your say?
#adultchdwarriors #CongenitalHeartDefectDisease #HeartCondition #HeartDisease #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #CongenitalHeartBlock #ChronicIllness

I’ve always had a scar from my open heart surgery, since I had surgery at three days old. It’s always been apart of me. I’ve had three open heart surgeries in all and so I’m used to my scar and how it’s changed over the years. There are times I’ve gotten annoyed at others comments over my scar but overall I couldn’t image my body without it. I take pride in it because it’s proof that I’m a survivor and a warrior.

Do you have a scar? How do you feel about it? #CongenitalHeartDefectDisease #HeartConditions #HeartDisease #Cardiomyopathy #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #HypoplasticRightHeartSyndrome

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 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