adultchdwarriors

This group is for any adult with CHD! Feel free to ask questions to the group. Post your story. Or just share your experiences living with CHD. #CongenitalHeartDefectDisease #adultchdwarriors #ChronicIllness #Disability

I can’t believe the first week of December is already over! I feel like the holidays are going fast in my house. I hope everyone is having a safe and joyful Holiday season.
#CongenitalHeartDefectDisease #RareDisease #MightyTogether #ChronicPain #MentalHealth #Holidays

What is World Heart Day
September 29th is World Heart Day. World Heart Day was created by the World Heart Federation to educated people around the world that Cardiovascular disease, including heart disease and stroke, is the world’s number one cause of death. Cardiovascular disease claims 17.9 million lives each year.

3 ways to help keep your heart healthy
1. Reduce your salt intake - (This one I have to remind myself cause I love my salt) however sodium can lead to water retention in the body which can make the heart struggle to pump properly.
2. Stop smoking or drinking alcohol - Alcohol and smoking can cause damage to the heart
3. Go for a walk - 20 to 30 mins of moderate exercise a day can strengthen your heart muscles

#CongenitalHeartDefectDisease #AmericanHeartAssociation #HeartCondition #PulmonaryHypertension #adultchdwarriors #Disability #ChronicIllness

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

This past week I did my first Stress test since my last open heart surgery. I feel like I did pretty well but I have to say, I really hate doing these! I’m not sure how many of you other CHD’ers have had to do these but I now have to do them I believe every year and I hate them. They are a sensory nightmare.
Have you ever done a stress test? How do you feel about stress tests?

#StressTest #CongenitalHeartDefectDisease #PosturalOrthostaticTachycardiaSyndrome #HeartConditions #CardiovascularDisease

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

The heat always affects me the most and it has been hot! Make sure to take care of yourself when it’s hot outside heart warriors.
#adultchdwarriors #CongenitalHeartDefectDisease #PosturalOrthostaticTachycardiaSyndrome

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

It’s CHD awareness week! The 7th through the 14th is congenital heart defect awareness week. CHD affects 1 in 100 babies. And is a lifelong condition without cure.
#adultchdwarriors #CongenitalHeartDefectDisease #Disability #RareHeartDefect #RareDisease #ChronicIllness #HeartConditions #HeartDefects

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