I had an ASD / mitral valve repair at the age of 6 1/2, and I've been visiting with my cardiologist twice per year ever since (I'm 21 now). Every time I visit, my doctor says that she would "never know that I had open heart surgery if she didn't see my scar." She also notes that the residual leakage from my valves is very minimal, and that's normal because the three holes in my heart could not be closed fully (otherwise they would burst). I have normal EKGs, too.
I'm wondering -- will I have a normal life span? My doctor mentioned that I may have to have a very minor tweak of the repair in 30-40 years, but that's not definite. My pulmonary arteries are very MILDLY enlarged, but several doctors have said that that's normal considering what I've been through (I've also had five surgeries to deal with very mild spastic diplegic cerebral palsy).
I eat incredibly healthy and I work out daily, and really the only thing that I notice is that sometimes, I'm just a little bit winded when I walk fast or up and down stairs. Other than that, I barely notice anything.
(I'm 39, had lived 30 yrs not even knowing that I had a GIANT ASD, cut it pretty close but had it fixed last dec (2010) and I'm still here! ;)
Hi! I just wanted to stop by to give you a few words of encouragement (& a rather long, but hopefully also encouraging, very true story). I was born in a VERY rural hospital, back in the early 70's and appeared to be a perfectly normal 7lb blue-eyed bouncing baby girl. I lived a fairly normal childhood, other than having a pretty nasty case of bronchitis most of the fall and winter mos (causing me to miss a lot more school than I wanted and even more holiday festivities), a touch of asthma and seasonal allergies the rest of the yr, and having a little trouble breathing after playing hard, running, etc. It wasnt enough to alarm my parents, grandparents, or any of my teachers or caregivers (who were pretty much all over-protective of us kids and took/sent us to the dr probably more than average bc we were a very small, close community.) It wasn't until I saw my 1st cardiologist at the age of around 30 (at my husband's insistence b/c of worsening heart palpitations that I started noticing the most when I was pregnant with our first child; especially when I was at rest/trying to sleep.) We moved to a state where we lived in the mountains and the more hiking I did, the less sleep we both got. So, I made an appt with my primary who listened to my heart, did an EKG, and referred me to a cardio.
While researching the cause of the crazy palpitations, skipped beats, trouble catching my breath (especially after taking a hot shower. Hmmmm...) etc, the 1st cardiologist ordered an external echo where he saw what he thought was a small hole on the back side of my heart. He consulted a renowned cardio surgeon and together they decided that unless I had chest pains or other heart-related problems, the open heart surgery where they would have to stop my heart to get to the back part where the "small" hole was located, was more dangerous than living with the hole itself. So, my cardio, a kind, elderly man, sent me on my way telling me to be sure to check back in, in a few years, and 'go live, (*he paused for effect, I assume*) and I mean LIVE.'
Fwd 4 yrs, I've had all kinds of health problems, none related to my heart, but they have resulted in us meeting our out of pocket and deductible for that yr so the husband says-"YOU ARE GOING TO THE CARDIO" So, I put up the usual fight and we have the usual outcome...he gets his way. And it's a dang good thing or I probably wouldnt be sitting here talking to u now. After just a few short tests and an, "I'll be praying for u, hon." from one of the nurses, I had a feeling I was in trouble. My husband had to be out of state for work, so my parents and my daughter went with me to get the tesults. An internal ultrasound found one of the very largest holes the heart institute that treated me had ever seen (if not THE LARGEST-he called it QUITE IMPRESSIVE). My heart was enlarging at a very rapid rate bc of the amount of blood shunting through the hole & between chambers. When we asked the dr how long I had if I opted not to have the surgery, he looked away and said 2 to 3 yrs max. Maybe less if the shunting amount increased (which wld cause my heart to increase in size that much faster) I was terrified of open heart, even tho I've had 2 children the natural way, have had 12 other surgeries, including a radical abdominal clean out and then hysterectomy 2 yrs later. I kinda knew what to expect after A SURGERY, but this was my heart-for some reason it was hard for me to get past that! But because of medical advancement, open heart was no longer necessary AS LONG AS THEY DIDN'T HAVE TO SEW THE HOLE SHUT THE OLD FASHIONED WAY BECAUSE THE MESH CLOSURE DEVICE DIDN'T COME IN A LARGE ENOUGH SIZE and we were in a hurry here . But they did it! They went through the artery in my groin so I just had a bit of "prep" by the nurses, and then a small hole on each side of my groin. Then my hubby (who drove all day and nt to get there in time to sleep beside me in a hospital chair) and I stayed overnight for observation and returned home with very little weakness or pain considering I'd just had a device sewed straight into my HEART!! Absolutely amazing what they can do these days!!! I went into the cath lab not knowing what to expect. The hole in my heart is just fine for now. The medication that you must take for at least the first yr to ensure that the heart muscle attaches to, and grows over the device, makes u hurt-BAD-BUT, I'm here to tell you about it, so I can't complain about that!
Also, the army told my Grandpa he had a hole in his heart, too. He lived two months shy of 95 and was healthy as can be til he hurt his back at 93.
Oh, and if I were you, I'd keep up the heart healthy eating, low stress lifestyle and <3 healthy exercise...I hear, it works. ;)
Best of luck to you! Jo
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