[Brittany Foster]

Yes, I was born with congenital heart disease. I had a large VSD that was prepared, ventricular hyeprtrophy,right sided aorta and hypoplastic left part of the aortic arch where the carotid and subclavian arteries are. I had a pacemaker put in for heart block,and a bypass surgery to correct something called subclavian steal syndrome (which was caused by my arch deformity) . I had severe PH before my surgery to repair VSD. Now it is mild and exercise induced.

[Kathleen Sheffer]

Most doctors believe my CHD – Transposition of the Great Arteries did not cause my PH, but whatever caused my CHD also caused my PH. So I had (wow, so weird to type had not have) idiopathic pulmonary hypertension and a heart defect, but not PH secondary to that defect. I think there’s still a lot to learn about the connection between these two diseases.

[VK]

@marta-ribeiro Marta – Thank you for the topic. I understand PHTN is an underdiagnosed issue for those with CHD.

@brittany-foster Britt – Scary coincidence, I had a large VSD too (membrane there but barely!). I guess I am lucky that I didn’t have anything else, although that’s why the surgeons said my life would be normal forever on but it’s not.

@kathleen-sheffer Kathleen – I’m not a clinician but as a scientist I agree with there being a mutual root cause. Hopefully they can find out the root causes…

Though in the end, who knows what the horse is and what the cart is. I got the VSD repair because I had severe PHTN that would progress rapidly to Eisenmenger’s syndrome and fatality without operation. They might have torn out the growth zones of my rib cage in the process (sternotomy and open heart surgery at 9 months, also a long time ago before surgeons recorded every single detail of the orthopedic assault) because my rib cage didn’t grow much after that.

Plus I was later diagnosed with spinal abnormalities which didn’t really contribute to my spine growing and truly adds to the fun of being unable to breathe and everybody else thinking that you should be able to breathe just fine just like everybody else.

(FYI: I’m lucky to have a genetic diagnosis of classic Ehlers-Danlos syndrome, which easily explains the increased VSD chance and to some extent spinal issues. Getting the world to accept all this, as you all know from your own stories, isn’t as easy to do.)

[Brittany Foster]

I can understand this VK. Living with a few rare diseases myself, it is hard to spread awareness not only to the outside world, but to doctors and medical professionals too! Increased awareness and education is so important because these things do exist and complications CAN happen from any surgery even if people with CHD are considered “fixed” ( which I HATE that word by the way!) There isn’t even a “fix” for a sprained ankle ! I mean come on lol. I sprained my ankle in 6th grade and still feel it being sore in the cold ! Off topic but you get the point hahaha!