I Just Know

I went to Dr F (the cardiologist) again today. I completed all the tests he ordered except the tilt-table test to check for POTS. I bought books on interpreting EKGs, I read articles on how to interpret what I read on my echocardiogram… I really worked hard on understanding what was going on with my heart. From what I saw, I was sure that I was right about the heart problem. I figured the doctor would say that there were some abnormalities and maybe he just wanted to wait and see. I didn’t think he’d jump all over a diagnosis of diastolic dysfunction, but I thought the tests might raise some suspicions.

I was wrong.

Not about the heart problem – I was wrong about the doctor seeing it. He cheerfully informed me that I had had wonderful test results, and that his other patients would “literally” (I hate when someone says literally when they mean figuratively) die to have my echo results. I was shocked into silence.

I have always worried that I know just enough to get me into trouble. I am under no illusion that I am a doctor. I am open to the idea that I just don’t know how to read the results of these tests. Despite all of that, I have a gut feeling that just this once I’ve gotten it right, but I can’t make the doctor see it.

Before making my case, I’d like to point you to a TED talk by Abraham Verghese.

Dr Verghese makes so many wonderful points, but for the purpose of my argument, I want to focus on his point regarding testing. He states (half-jokingly) that if someone came into his hospital missing a limb, no one would believe it until they get a CAT scan, MRI or orthopedic consult.

I came to my current cardiologist six weeks ago with my recent revelation that I have a problem with my heart. I had barely gotten started making my case when he interrupted, telling me that I was too young to have heart disease, and then he started referring me to all sorts of other specialists. We were interrupted so many times that I was unable to describe the main symptoms that make me think I have a heart problem. I managed to ask Dr F if he had heard of the work of Dr Paul Cheney (he had not). I managed to tell him that my blood pressure is too low, and my heart races. I tried to tell him that my thyroid medication is what makes my heart race, and that when my heart races I can’t breathe. I repeatedly coughed and gasped for breath during this appointment.

A few weeks later I got a written summary of the visit. He repeatedly called me “delightful” throughout the report. He noted that I had a strong family history of heart disease at an early age. He noted my diganoses of Hashimoto’s disease, allergy to gluten, PCOS, hypoglycemia, CFS/ME, and dysesthesia (a fancy word for numbness) of the face. Nowhere in this report did he mention the cough or gasping for air.

Since I saw Dr F the first time, I backed off and eventually stopped taking all of my thyroid medication. The cough and tachycardia all but disappeared (if I had caffeine or stood up too quickly or for too long, the tachycardia returned with the cough on it’s heels). As I am reintroducing the medication at a lower dose, the symptoms are coming back. Definite causal relationship there.

Today, when I came back to Dr F and he gave his pronouncement that I was healthy on paper, Michael and I were prepared to challenge his thought process. We had concerns about the Holter Monitor report.

“You only had two heartbeats that were irregular, but that is totally normal,” said Dr F. I completely agreed with this point.

“But how do you explain the tachycardia, so often during the day,” Michael asked.

“Well, the average heart rate is 88, which is a little high, but nothing to worry about. Exercise will fix that. Besides, heart rate can vary depending on your activity level.” Has he missed the point I made last time about how I pay inordinately for a small amount of exercise?

“But Barbara is sedentary, and her heart rate got up to 172… how do you explain that?”

“Well, it depends on sensory input. For example, if you’re watching a scary movie, it can make the heart rate increase.”

“What if that doesn’t apply?”

“It’s nothing to be concerned about.”

“But how do you explain the fact that Barbara’s cough correlates with the tachycardia?”

“I don’t know.”

I then brought up my concerns about the findings on the echocardiogram.

“I noticed that my ejection fraction was 75%, and the report calls my heart hyperdynamic.” I learned from Dr Cheney’s lecture that the heart can compensate in the systolic phase for a lack of diastolic filling by simply pumping more of the total volume out with each stroke.

“That’s not a problem,” replied Dr F.

“Well, I also noticed that my E/A ratio was 1.79. I understand that the normal range is 1.0 -1.5. Isn’t this a concern?”

“You’re the first patient I’ve ever had ask about the E/A ratio. This ratio varies with age, and in young people it can be over 2 and they don’t have any problems. Really, it’s no big deal. Listen, be careful about looking at these numbers in isolation. When I was in med school, we did echos on each other and by the time we were done we were all convinced that we had serious heart problems. The next day when we came back, we learned how to interpret the results and they turned out to be nothing. We were all fine.”

I didn’t even bother to mention my concerns about the end-diastolic and end-systolic volumes being below the normal range. He’d just try to tell me they are also of no concern.

I later thought about Dr F’s comments on the echos done in med school. These tests were performed on people who had no symptoms. Sure, in the absence of symptoms, abnormal findings can be benign. I think, though, in the presence of symptoms, they should be taken much more seriously.

I feel this illustrates the point Dr Verghese made in his talk. I have symptoms of heart failure – a cough that occurs when my heart rate rises, when I lie down, and when I exert myself. I had chest pain that another cardiologist called angina. My resting heart rate is way too high on occasion, and even on average it’s a bit too high (my book on interpreting EKGs says that sinus tachycardia, the kind I have, should never be ignored because it’s often the first sign of left-sided, or diastolic heart failure). The doctor has dismissed these signs and symptoms in favor of tests that show some results that are not severe enough to mean I am in serious trouble, but they are nonetheless abnormal. I think this doctor is missing an obvious diagnosis because he is more concerned about the patient in the computer than the one right in front of him.

I never thought I was in imminent danger of having a heart attack, but I do think there is just enough dysfunction in my heart to be causing the symptoms that are currently wrecking my life. All I ever wanted from this guy was recognition that this is so. I’ve done my homework – I know that it can’t be cured, only managed. I’m fine with that. But to deny there is a problem at all, this is a mistake.

I am hesitant to second guess a professional, especially a doctor. I know, however, that doctors aren’t always right. I had a broken ACL when I was in high school. The orthopedic surgeon did an MRI and tested the range of motion in my knee, but he did not feel that my ACL was actually broken. In the end he agreed to do exploratory surgery, and if the ACL was indeed broken, he’d repair it. When I woke up in the recovery room, he informed me that, wouldn’t you know it, the ACL was torn and needed to be repaired. I simply said, “I told you so.” And just like with my ACL, I’m certain my heart is broken. I just know.

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