no more counting up.
As I was sitting in the exam room yesterday, I remember thinking--wow, cardio appts have gotten less dramatic, i used to always feel the need to journal or LJ about them, but nothing too exciting this time.
And then...
I've been going to the cardiologist since I was born with a cogenital heart defect. First surgery at 2 week. Open heart at 2 years. I don't remember either. I have nomajor memories of cardiac symptoms other than occassional shortness of breath and one not so fun episode in high school. For as long as I remember though I have been going to the cardiologist annually. They perform an EKG and an echo--two tests that while uncomfortable at times, are not invasive and relatively quick. And then I meet with the cardiolgist. For the past 11 years, I've had the same cardiologist. D. Matherne. I was friends with his daughter in h.s. and I've always liked having him as a doctor, especially after my cardiologist in Savannah, who not so tactfully told me I might need to have surgery when I was 17. It was one of the scariest moments ever for 14 y.o. me. And then I came to VA, connected with D. Matherne, and proudly celebrated my 18th birthday surgery free. The biggest moment recently was a few years ago when I got an MRI (which I think i chronicled in this journal) but the results of that were the same as the other tests--no real change, she's as close to normal as some one with tetrology can be.
I said yesterday, I'm always so fascinated by why people are fascinated by my heart. There are always med students with D. Matherne and they listen to my heart and ask questions and I tell them the boring realities of my life. I don't know how to fully express this nuance--I never ever forget that I have a heart defect but I also spend very little time remembering that I do.
And yet...
I realized yesterday as I got ready to go to the cardiologist: I will always have to go to the cardiologist. I will never not have to deal with this. It will never be cured. Which is a bit daunting. And then I got there and everything was normal/remains normal, but D. Matherne made a change. Now, instead of having to wear a holter monitor every few years, I have to wear one every year. The monitor is five wires glued to my chest that run to a little box (like the size of a cellphone) For 24 hours it takes readings from my heart and I have to write down my activities in a little journal. It's itchy and awkward looking and I can't shower. But really, it's 24 hours of my life.
It shouldn't be a big deal. And yet this change to annual holter has left me sad/uneasy/anxious. This is an escalation. It feels like a tipping point. For all these years it's been about managing the after effects of having heart surgery when I was little. Making sure that as I grew into my heart everything was developing regularly--it was about gaining distance from that surgery and trauma. And with this shift in proceedure, I feel like I'm coming down the other side of the mountain marching toward it again.
I like timelines. So even though D. Matherne says he doesn't have a crystal ball, I ask for numbers. What are my current numbers? 2-3 years till my next MRI--5-7 after that to my next (and hopefully/maybe last) open heart surgery. I'm back to counting down instead of counting up. It's now about gathering data to say when I should have the surgery, not long term recovery from the first surgery.
And in case you couldn't guess---I don't like that. I'm honestly not that freaked out by the surgery. I have no doubt I will be majorly freaked by it in the future and cry and throw tantrums even if I'm 30 when it happens. Right now what I'm most upset by is the inescapability of it. The inevitableness of it. Do. not. like. I want to make decisions about my life. Not have a flap of muscle in my heart determining things.
I don't know how I'll get into a good headspace about this. How I won't make the next 5-7 years a countdown. I won't though because that would just be too much. For now, however, I'm frustrated, and tired, and sad, and scared, and I can't even take a shower for another (consults handy-dandy-countdown-box attached to my hip) 6 hours and 39 minutes. Sigh.