heart defects

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How do you describe your heart condition to people? #CongenitalHeartDefectDisease

Sometimes when you tell people who have no idea about your heart condition you get creative about ways to easily explain complex heart problems. I was born with Transposition Of the Great Arteries with a Mustard Correction still in place. So basically I tell people my heart works backwards or pumps my blood opposite then normal. It’s the easiest way to explain it to people a they kinda get what my heart condition is. So how do you explain you heart condition to people?
#Disability #HeartConditions #TranspositionOfTheGreatArteries #RareHeartDefect #HeartDefects #MyCondition

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Need someone

Some time we don't understand god plan . Sometimes we think why god snatch the opportunity by put in birth diseases. I'm 26 years old when i know I'm suffering from coarctation of Arota i.e major heart problem. At that time even my close friends, relative,even my girlfriend leave me. I look myself around butvi find no one alse..when i went to operation theatre for angioplasty ,i had never know that i come out from Operation theatre alive or dead.now due to god blessings I'm am little well than before...i make promises to myself that i would only make friends,girl friend who are suffering from some diseases like surgery, angioplasty, diabetes, etc.. beacause these people know what is love and affection. I know what a person felt when somebody left in life. So please make a friendship with me who wanna share their feelings..i always there.. beacause we don't know how much time we have. #chronic dizziness #ChronicIlless #heart defect #heart problem #heart Surgeon #HeartConditions #HeartDefects #Surgery #InvisibleDisabilitiesWeek #InvisibleIllnessAwarenessWeek #CongestiveHeartFailure #BirthDefects #BirthDefect #Alonewithnosupport #alone #Survivor #SuicideLossSurvivor #SupportGroups #Disease #ChangeSchizophreniaExpectations #

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#HeartDefects . Till 26 i didn't know about my problem.but suddenly after that i suffering from anxiety headache high blood pressure and some time least attack..then after i went to doctor ,he said to me that i suffered from coarctation of Arota i.e cognital birth mark..two operation had done of mine .first ballooning then angioplasty .

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It’s CHD Awareness Week

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


Insights from a chat with another medical mama tonight:

👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

More on our site at www.aaronandambersfamily.com

#DownSyndrome #HLHS #HypoplasticLeftHeartSyndrome #Tracheostomy #MedicallyComplex #CongenitalHeartDefectDisease #MedicallyFragile #HeartDefects #Stroke

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First Endo and now an Aberrant Right Subclavian Artery

Last week I found out I was born with my right subclavian artery wrapped behind my esophagus, causing chronic nausea and some dysphagia due to compression.

During my 35 years, I’ve also suffered through endometriosis, resulting in five surgeries over the last eight years. The last and what I thought was my final surgery, was a hysterectomy performed only last July. So I am accustomed to pain, nausea and my life being in an on-off state of pause. The River of Uncertainty, I call it, and this recent diagnosis has me further in uncharted waters.

I haven’t been able to work, let alone really leave the house, in over five weeks. I tried walking to the train station this morning, only to turn around after I dry heaved and eventually threw up a few times.

I spend most of my days beached on my couch watching terrible reality television - I’m nauseous anyways so I figure shame tv can’t hurt.

I am reading through the few medical journals I found online. However, it would be great to talk to someone who has experienced or is familiar with this super rare condition while I wait to hear from the cardiac team.

Thanks so much.

#Endometriosis #ChronicNausea #HeartDefects #HeartConditions #MentalHealth #CheckInWithMe


Know anyone who has been diagnosed with an Aberrant Right Subclavian Artery??

Last week I found out I was born with my right subclavian artery wrapped behind my esophagus, causing #ChronicNausea and some #Dysphagia due to compression.

I’ve read through the few medical journals I found online. However, it would be great to talk to someone who has experienced or is familiar with this super rare condition while I wait to hear from the cardiac team.

If you have the same diagnosis/been diagnosed, or if you know someone who has been diagnosed, or if you have any more information, please contact me.


#Rare #HeartDefects #HeartConditions #help #Diagnosis