heart defect

Join the Conversation on
heart defect
196 people
0 stories
14 posts
Explore Our Newsletters
What's New in heart defect

Scared of being in a relationship cause of a heart condition

First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
#aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure

1 comment


Hello, i'm still alive. I think I failed my oral English exam or something like that. I got too nervous and couldn't say anything right. I could feel a frantic heartbeat, cold in shaking hands and a lump in my throat. I almost died. D*** it! I don’t know whether I am glad that I am alive or sad because I have not died. 😫😫😫

- #idkwhattodo 😩
- #DontWorry, idn what to do too. ☺️
Thank you #HeartDefect . 🙃
#ifeellikemylifeisover every time I fail exam. 😅
#Headache, you are doing great 🤹‍♂️

For some reason my whole group felt that they were going to be executed...

I hope you are having a good time. That makes me happy for some reason. 🤔

See full photo

www.youtube.com/watch #healingjourney #Pain #ThoughtfulHuman #Art #Music #HeartDefect

Home is where I want to be
Pick me up and turn me around
I feel numb, born with a weak heart
I guess I must be having fun
The less we say about it the better
Make it up as we go along
Feet on the ground, head in the sky
It's okay, I know nothing's wrong, nothing
Oh! I got plenty of time
Oh! You got light in your eyes


Pace maker friends I have a question about tattoos

I’ve been wanting a tattoo for awhile now and ai just brought it up to my Mom, and she said I really shouldn’t because I have a implanted device and I can get a infection in my heart. After doing some research I found that it is recommended to take the antibiotics you take when you go too the dentist but she thinks it wont be good enough. Any thoughts? Or do you have tattoos and a pacemaker or implant? #Pacemaker #heart #HeartDefect #CongenitalHeartDefectDisease #Doctors

1 comment
See full photo

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


Somewhere #CHD #HeartDefect

A family is waiting to hear
Is something wrong with their baby?
The answers aren't quite clear.
This family has entered an unwanted world
And they just don't know what to expect
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped it wasn't true
And thought this cannot be
I too know, just how this feels
For one day...this was me.

A man and a woman embrace
Their baby is in surgery
They long to see her face
They haven't got to hold her yet
Without a cord or line
They pace the room awaiting news
And hope she'll be just fine.
Prayers fill this busy waiting room
And mom and dad are scared
The tiniest hearts are repaired.

A child's growing fast
Smiling, laughing, thriving
His mom thinks...can this last?
It's almost easy to forget
That anything is wrong
Her child seems so strong.
Somewhere...someplace... today
A little boy fights...just to live
A father holds his tiny hand
His love...all he can give
The doctor's are all baffled
They fear that he might die
A family says goodbye.

Somewhere...someplace...each year
Numerous families will see...
What it means when something's wrong
They'll face a CHD.
Today...for just a moment
Make time to tell someone you know
"I've been changed by a heart defect".

~Stephanie Husted



My outpatient program had a party today, there were a lot of people different part of NJ came together to celebrate mental health. The party was very loud with music, then my heart starts to beat faster than normal. I walked out of the room and a nurse helped by taking vital.