Sunday, March 4, 2018

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. 

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.


Lynn said...

Always praying for you and your family every day. Will be praying even harder that you can figure out exactly what's going on and that the dr(s) is(are) trustworthy! It's so very hard if you can't trust the dr! Big hug!!!!!!!!!!!

Suburban Correspondent said...

Is there a Children's Hospital you could take her to? There's one near me, if you want a second opinion. We have a guest room, when grown kids aren't staying in it.

Bonnie said...

My almost 20 year old daughter has POTS. It's a crazy condition. We found the most helpful doctor to be a pediatric neurologist. There is a Facebook group called POTSibilities Parents. A lot of good support but there are also a lot of desperate parents, so don't believe everything you read there.

Tiffany Walter said...

Such a scary time for you and your daughter. I follow your family on facebook since forever. I know you are in Florida but there is a top-notch children's hospital that specializes in cardiology (Stead Children's Hospital) at the University of Iowa. I know you can't just afford to go there but maybe there is someone there you can begin communicating with electronically to see about options? They are the hospital that started the "Wave" at sporting events if you have seen that. It can't hurt to see if there is someone anywhere near you that they would recommend you see so you aren't flying blind or you can just take a road trip to Iowa this summer and stop and see your family in Illinois :)

SherryA said...

Just curious if she had a tilt table test for the fainting and dizziness? My daughter doesn't have the fast heart rate but the other stuff she has experienced. She flunked the tilt table test (diagnosed with/vasovagal syncope) takes a beta blocker to stabilize her blood pressure which has helped with her BP problem. Will pray about this. You can't seem to catch a break. On the positive side, what a blessing that it was caught now. And, how did she get to be 16?? Time flies!

Anonymous said...

I too have no faith in Florida doctors. My friend 's niece had a stroke 42 years old. Docs said she was brain dead. Her husband refused to turn off life support, had to fight to get them to release her, flew her back home to Atlanta. The doctors there said her brain was still swollen from the stroke and they would wait and see. She woke up 2 weeks later and is 100% recovered now, about 4 years later. The Florida doctors would not even wait 3 days to d Clare her brain dead; a young healthy person they wouldn't even try to save. She would be dead if she hadn't had a living and somewhat wealthy husband to pay for a flight back home. Anne

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