When Your Kid Is Afraid Her Heart Will Explode

My kids who are old enough to do so, donate blood whenever they can. I'm incredibly proud of them for their selfless acts that have helped countless others over the years. When Lexi turned 16 she wanted to join her older siblings in donating. Upon her insistence we stopped at a Big Red Bus one day so she could unite with the ranks of those who donate blood to save lives. She filled out the required forms, I signed them, and the technician took her temperature, blood pressure, and pulse. Her heart rate was over 100 and you cannot donate blood unless your heart rate is under 100. They told her to relax for a few minutes and they'd try again. She wasn't nervous, but she took some deep breaths, and sat there chilling out for a few minutes. When they took her pulse the second time, it was still over 100 so she was deferred. Dejected, she left the bus as I expressed once again how proud I was that she had been willing to donate. I reminded her that she could always try again another day.

And she did. She tried two more times and two more times she was deferred because her heart rate was over 100. The last time, the technician informed her that her heart rate was 154 as she sat there calm-as-can-be. "A young, fit girl like you shouldn't have a heart rate of 154. No one should have a resting heart rate of 154. You should really get that checked out."

So I immediately made an appointment with a pediatric cardiologist. While waiting for the appointment, Lex and I frequently took her pulse. It was always over 100. Until the day of the appointment. As Murphy's Law would have it, when the nurse took her pulse it was 70-something. I felt like an idiot. Honestly, it's always over 100. Like always. I'm not making this up. I'm not crazy. Honest. The nurse said she believed me, but I'm convinced she really thought I was a moron. She did an EKG and then the doctor spoke with us, asked a bunch of questions and checked out Lexi. She had the nurse take another set of blood pressure and heart rate readings while Lexi was lying down, sitting up, and finally standing. Her heart rate went from 80 to 144 when she stood up. See?! I told you I'm not crazy! Ha ha! Told you so!

Upon those findings, the doctor ordered another echocardiogram (Lexi had had one a couple years earlier when she'd been passing out in PE and her pediatrician sent us to the cardiologist to rule out any serious cause.) She also equipped Lexi with a Holter monitor which Lexi wore for 24 hours to monitor her heart rate.

A few days later, the doctor called us and seemed surprised at the Holtor monitor's results. There were some curious findings that prompted her to refer us to an electrophysiologist (a doctor who specializes in arrhythmias) within the same practice.

So we met with the electrophysiologist. He seemed to think that Lexi has an autonomic disorder which makes her heart rate raise with postural changes, but due to the heart monitor findings, he believes she has an arrhythmia as well. He started her on beta blockers to see if they would help, but said that most often an ablation is needed to fix the arrhythmia. An ablation? Wait what? Like putting my daughter to sleep? Threading a catheter through her groin to her heart and zapping the malfunctioning tissue? Now I think I have tachycardia!

Long story short - the beta blockers exacerbated her migraines. Neurologist visits, cardiologist visits, ER trip, cardiologist arguing that beta blockers are used to treat migraines, neurologist arguing that beta blockers can worsen migraines especially if blood pressure drops too low. Off the beta blockers. Migraines back under control.

We met with the electrophysiologist a couple days ago who asked Lexi about her symptoms again - mostly a racing heart, sometimes slow, pounding heart with chest pain, dizziness, etc. He said that it was "complex" because he thinks she has more than one thing going on, and decided he needs more information. Tomorrow Lexi goes for an exercise stress test with pulmonary function. Later this week, she'll start wearing a heart monitor for 30 days to hopefully get a clearer picture of what all is going on. 

Then again, I have no faith in Florida doctors. Literally none. Why, you ask?

A doctor told Austin he was HIV positive because tests were messed up. He wasn't.

I went to the ER and said, "I have a genetic clotting disorder, a history of DVTs, I just drove home from Chicago, and my leg hurts. It wasn't until my third visit when I couldn't breathe that they realized they'd missed the blood clot in my leg until it went to my lung. I'm lucky to be alive.

An orthopedist told us that Clay needed surgery on his knee right away. Then he paused and asked if I thought that was the right course of action. 


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A second opinion said surgery was absolutely not needed at all.

Let's see . . . then there was the doctor that told us that Jackson probably had cancer when he was seen for his swollen gland.

I could go on, but I think this illustrates my point.