I have tons of experience telling my story about recovery from addiction, but this will be the first time I've ever told my heart survival story. Most of the time people see my scar and ask and I give a short, well-rehearsed speech about how I've had 3 open-heart surgeries because I was born with an underdeveloped heart and I'm in pretty good shape these days and by the time I need another open-heart then by that age all my friends will be having them.
Really...that doesn't cover it....at all. But who really wants to hear about the heart caths, the postponing of the first surgery, the growing up and not being able to keep up, the making of the decision not to try to have kids, the third surgery and all the fun since then?
Like my story about my recovery...a lot of this is second-hand. I mean, come on, how can I possibly remember having my first heart cath at 4 months old? I was a blue baby, but it wasn't until I was 4 months that they had to do a heart cath and found out about my Tetralogy of Fallot with Pulmonary Stenosis. Or in my world today TOF. My mom used to tell the story about me standing up in my crib and screaming at the top of my lungs while they took me away. The doctor told her I had a strong spirit and would eventually be fine. Or as I like to refer to now...I'm too mean to give up anytime soon.
My parents then had the dreaded talk with the doctors with the surgeons on one side and the regular docs on the other with the surgeons saying "YOU MUST OPERATE NOW!!" and the docs saying "YOU MUST GIVE HER A FEW YEARS!!" I can't even imagine. They elected to wait because a funny thing happened. There's an artery in babies that go up into their neck and then when you're born or close to being born it goes away. Mine stayed. So I had a little by-pass that kept me going.
Now, I still had no air and I still passed out and ended up at the ER a lot. But I grew and became your average sized five year old and they started making plans for the first surgery. Only I got some weird blood disorder which postponed it a few times. The last time I was already in the hospital ready to go and they decided to wait. Apparently having surgery postponed at the last minute is just as annoying for a five year old because I threw another colossal fit. (hmmm...pattern?) But they finally did it a few weeks later. All I remember from number 1 was that the hospital was being completely re-done so I had to sleep in a crib in the baby ward. And my mom had brought me some bubble gum flavored toothpaste.
The story from the first one was my grandma called to check on me the day I got out of ICU and my mom said "I can't talk - she's gone" and hung up on her. Grandma heard "Gone" as "Passed Away" and freaked out. Mom meant "Gone" as "Disappeared" and hung up to go find me playing in the play room. (Children's hospitals rock!)
My second one was my 12 hour one. I was 8. My first conscious thought was "Why are you poking me? I'm sleeping really well!" But 12 hours on the heart-lung machine are bad news for brain function so they were doing neurological testing. I remember hating the oxygen mask...which carries through to today but I like it better than the stupid canula. Just saying.
Then that was it for awhile. I got older, stopped having to go to the doctor every 6 months, struggled through sports, got a waiver to keep me out of PE. Then hit 18 and became active enough with boys that we had to make the decision about birth control. The general consensus was NOT a good idea so at 18 got my tubes tied. Through all this I got a lot of cases of bronchitis and my senior year my lung collapsed twice. Two years later we found out that I really needed some repairs to my heart.
Which led to surgery number 3. Here's where it gets crazy. The key to surviving open-heart surgery is your blood has to clot. Alcohol thins the blood. I managed to get drunk two days before the surgery. I knew going in to the deal that I had seriously screwed up my chances of survival. Before the meds kicked in I thought "Okay, God, here's the deal. Either I live and there's a reason for me to be here or I'll see you soon." My next conscious thought was "I could take a deep breath if you'd take this stupid tube out of my throat." and then I threw up. This was in ICU a couple days later. And I'm typing this, so, I guess we can all agree I made it.
Since then, the hearts been doing pretty good. I'm on a schedule with my doc, pop in and say high in the spring, have an echo and a holter monitor in the winter. Go over the fact that I'm not exercising enough. And re-schedule for the next time. A couple of years ago we discovered I've sprung another leak. But it's not bad enough to be serious and in need of repair any time soon. Yay!! Although, I'm sure the day is coming and since I'm on the verge of 40...which is a whole other post....I will be at the age when all my friends are having one.
And to the doctors who told my parents that if I didn't have the surgery right then I would be dead by the time I was three. You....were....wrong!!! Never underestimate the power of a hard-headed baby and parents willing to do whatever it took to keep her here.
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