Tetralogy of Fallot

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Yearly cardiologist check up went great! #CongenitalHeartDefectDisease

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

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Heart Month Photo Challenge #adultchdwarriors

I thought it would be fun to do a Heart Month Photo Challenge for awareness of Heart Month. I’ll also be posting a shorter version of this for #CHDAwarenessWeek for the 7th through the 14th for anyone who doesn’t want to do a full month photo challenge but still wants to participate. Looking forward to seeing everyone’s photos. #CongenitalHeartDefectDisease #TetralogyOfFallot #TranspositionOfTheGreatArteries #ChronicIllness #RareDisease #InvisibleDisability #Disability #CheckInWithMe #DistractMe

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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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Types of Congenital Heart Defects

This list is super limited and I’m hoping to share more information. But I found this and I thought I would share it today. Here is some information for several CHD’s
#CongenitalHeartDefectDisease #VentricularSeptalDefects #Disability #TetralogyOfFallot #TranspositionOfTheGreatArteries

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Heart mom 💗


1. Live each day more grateful than the day before.
2. Don’t compare your heart baby to any other heart baby or a healthy baby
3. Don’t be discouraged if your child is taking longer to sit, stand, etc! This means more time for cuddles!
4. It’s okay to be sad about the “what if’s”
5. It’s okay to be happy and put the diagnosis at the back of your mind.

Sometimes we as moms get too invested in our child’s diagnosis than our child themselves. Besides doing what you need to do for your child medically like meds, feeds, etc... live a happy “normal (;” life!!

#heartmom #TetralogyOfFallot #pulmonaryatresia #mapcas

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Do you have a scar for surgery? How do you feel about your scar?

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

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How far do you travel to see a cardiologist?

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