Hearts Behaving Badly

I haven’t felt up to writing about my heart. It’s been too scary; too unreal. But today I got good news. So here’s the whole story. The longest entry in my entire blog.

I’ve been going to physical therapy for my back, which turned out to be fractured, for several months now, and I’ve done so well that I was able to start going to the gym. I’ve been working out pretty hard on the treadmill and elliptical machine, and in the pool for the last two months.

A few weeks ago, I noticed I was having chest pains when my heart rate was really high (140 to 150), about 45 minutes into an hour or so of hard exercise. I talked myself out of worrying too much, but the thoughts still came to me . . .

Then I went and had my eye exam, and the optometrist told me I have cholesterol behind my pupils, which I didn’t have at my exam two years ago. I freaked out, called the doctor, and went in that day. (I’ve always had high “good” cholesterol and low “bad” cholesterol, so this really worried me.) After the doc heard where my chest pains were, she sent me immediately to the hospital to get blood tests to see if I’d had a heart attack, and she told me to schedule an echo stress test. The blood tests all came back great, including my cholesterol. I stopped worrying, but she wouldn’t let me exercise again until I had the stress test. (The cholesterol behind the eyes turned out to be totally irrelevant, but it got me to the doctor!)

After the echocardiogram stress test, the nurse at Stanford said my EKG looked completely normal and the pain was probably muscle related. I pretty much forgot about the whole thing, until I got a phone call from my doc the next afternoon. The test had come back abnormal, and the cardiologist who read it thought there might be a major blockage in an artery. So they immediately scheduled a angiogram with possible angioplasty.

I subsequently felt so stressed out that I came down with a bad case of the respiratory flu. Go figure, right? The doctors decided to go ahead with the angiogram, in spite of my illness, although the cardiologist in the cath lab felt I had nothing to worry about – that this was just a case of an overly-sensitive echo test. My blood tests were great, my weight is great, my blood pressure low. What could really be wrong with my heart? I joked in the operating room that if I had a clogged artery, I was going to blame it on all the quinoa I eat.

We spent from 8am to 8pm at the hospital. In post op, I was coughing my head off while putting pressure on my femoral artery so it didn’t re-open, which could have caused me to bleed to death. Impressive, right? It was very humorous to hear me cough, and three nurses’ heads would immediately pop in through the curtain and simultaneously ask me, “Are you putting pressure on your bandage?” You’re not supposed to move for four hours, much less cough, so everyone was on high alert. It was like a funny bit in a play that went on for too long.

It turned out that I surprised everyone. (I need to think of happier ways to surprise people.) The angiogram showed that I have a congenital heart defect called CAA (Coronary Artery Anomalies). Less than 1% of the population has this. However, many people who have it never know until they die of sudden death after or during exercise. Exciting, no? It basically just means the coronary arteries aren’t as they should be, with varying degrees of abnormality.

So there was no clogged artery, only an extra-large healthy one, one that was very small, and one that was missing in action. Sort of like the three bears, but not quite. Which meant they needed to do more tests.

The next adventure was a coronary CT scan with dye (complete with beta blockers!), to see if they could locate the missing artery by taking more pictures of my heart. They needed to find out where the artery originated and where it terminated, in order to determine how dangerous the abnormally placed artery could be. Unfortunately, by now I was even more sick with the virus, and this event had to be rescheduled while we waited for my cough to subside. This didn’t add to the stress of it all. No, not at all. Okay, maybe a lot! At some point during this, I stopped caring much about my heart. I just begged to live through the darned virus.

Of course, once I went for the coronary CT Scan, the fun had to continue. They have to give you beta blockers to slow down the heart so they can get clear pictures. I already have a slow heart rate and low blood pressure because I exercise so much. Yup. Add that to a funky artery situation and mix with potent medications and right there you have a cocktail for disaster.

My spouse insisted that I would need less medication than most people, and got the nurse to call a doctor for permission to use less of the beta blocker. Permission granted, I was given a 1/2 dose. In about fifteen minutes, I was a dizzy, sleepy, heartbeat skipping, heart rate and blood pressure dropping mess. I barely remember being quickly hooked up to an IV and to an oxygen tank. I could almost make out the nurse yelling at me, “Breathe!” Yes, it was terribly frantic and I seriously wouldn’t want to repeat the experience. Ever. The nurse later told me to never let anyone give me more than a quarter dose of a beta blocker. Noted, I promise. Lesson learned.

After an interminable wait, the CT results came back. It turns out that there was no missing/hidden artery. It didn’t exist. Which was sort of good news: no surgery to move it. And sort of bad news: a heart needs its arteries!

Today, finally, I got the whole scoop. I have a zero calcium score (for arterial blockage), which is the best score you can have. I have no damage to my heart, no enlargement, no thickening. This is a great news for someone with missing coronary arteries.

My right coronary artery is the tiny one. I do not even have a left anterior descending artery – that’s the one that was missing and they hoped to find from the CT Scan. However, to compensate for the absence of a left anterior descending artery, my body has grown a diagonal branch and a large septal preforator. (You probably have no idea what I’m talking about. I only learned a couple of hours ago. It’s as if there’s no major highway/freeway where there really needs to be one, so they just bulldozed a couple of one lane circuitous country roads to try and handle all the traffic.) This takes me from a rare form of coronary artery anomalies to “very rare,” but it shows how the body can adapt to difficult situations.

I don’t need surgery. I’m not at risk for sudden death, unless I get my heart rate too high or too low, which could cause a heart attack. Any time there’s a lot of demand for blood to my heart, I’m at risk and need to be really careful and pay attention to my chest pains and heart flutters. I have to read the labels on over the counter medicines for warnings about anything related to the heart, and stay away from those medications. I have to stay hydrated ( I’m terrible about drinking water!) in order to keep my heart functioning properly.

The doctor says that I’m really lucky. He said I have a “Ferrari heart.” It’s amazingly healthy, in spite of the challenges it’s had to deal with. The reason I haven’t had a heart attack so far is because the arteries I do have are so clean and healthy. (Yes to healthy eating!) The reason I’m having symptoms now is because I’m aging and I push too hard. When and if my symptoms increase, we’ll deal with it, possibly with medications and more lifestyle modifications. Otherwise, I just have to exercise moderately (warm up slowly, stay well below a high heart rate, cool down slowly), stay healthy, keep eating the way I eat, and pay attention to symptoms.

I’ve always exercised hard. My older brother and I were trained as athletes, competitive swimmers from a very young age. When we stopped competing, we took up running. Anything to keep us moving. I compete with myself most of all. I’m always trying to go 5 more minutes, have a higher average heart rate, increase the resistance, 100 more yards in the pool, constantly challenging myself.

The doctor is right: I’m lucky. I get a chance to learn what moderate exercise means, no matter how sharp that learning curve turns out to be for me. My brother was not so fortunate. A few years ago, at the age of 49, he dropped dead after crossing the finish line of a half marathon. From a congenital heart defect, but not the same one I have. He left five children who miss him every single day. Who knows if he ever felt chest pain and ignored it?

Thank you to each and every one of my doctors at Stanford for paying attention. Thank you to the nurse who took care of me as my blood pressure dropped. Thank you to all our friends and extended family who called and emailed and supported us through this ordeal. You’re just going to have to put up with my scrappy, adaptive Ferrari-heart a while longer.