Day one actually is literally day 1, our birthday! Yes, "our". I have a twin sister too lol. My mom carried 2 full term twins (which is rare these days). We were both over 7 pounds. My sister WAS supposed to come out first, but then I decided to breach and stick my foot in the canal causing my mom to need a C-section. You can imagine that in the position I placed my twin and I, I caused plenty of stress on all 3 of us. So when they noticed my heart beat was irregular, it was an expected finding. They sent me home with a heart monitor, nothing came of it. Life went on.
I remember in t-ball I passed out one time at practice, doc says dehydration, makes sense.
After riding our dirt bikes (motorcycles) one day in the summer, I passed out (luckily landing mostly on my bed). Doc says DEHYDRATION
In middle school, the PE teacher was teaching us to take our pulses after our lap. So we all do it, and naturally I yell out what I got: "210!!" thinking it was a good thing. Teacher just assumed I counted wrong, I kinda just said "oops"
So fast forward to Junior year in high school. My twin shared Sports Medicine class with me, and we did mostly standing so the benches were clear for any athletes coming in with injuries.
My twin gives me the most eerie look. She races to the bathroom, comes back and says "Wow that was weird, I just threw up but I don't feel sick." So I blow it off. about 30 seconds later I get this crushing feeling, I'm looking around and there's this orange tint to everything I'm seeing. I feel light headed and felt this throbbing knot in my chest, the same feeling you get when you smash your thumb with a hammer. There's a 5 foot wall dividing the center of the class that the benches are posted on. So I decide to climb a bench on the opposite side so I can watch a demonstration while I'm laying down. Like I said, this is a 5 foot wall. I had to climb up to the 5 foot bench. so I hop on the 3 foot one, stick my arms out to the tall one so I can prop myself up. I propped up, and never made it to sit on the bench. I'm told I passed out trying to tell my teacher "I don't feel good." I didn't finish the sentence. Instead I woke up surrounded by my sister and my teacher, and he had all of my classmates across the room and out of the way. I hear him on the phone with 911: "I cant count her heart rate and I'm not getting a blood pressure but she's awake and breathing." He asks what hurts, so being completely wiped out exhausted, I bring my hands together over my chest and make them look like a heart. I don't remember much of that day, I'm sure I hit my head, and that was a far way to fall.
The following week I was placed with a Holter monitor and given a referral to UNM Children's hospital to see a specialist (3 hours from my hometown), so I decide it's in my best interest and schedule an appointment. The visiting cardiologist from Stanford decides to put me on an event recorder instead, and I could call in my recordings via landline. I was able to set record up to 5 recordings before the memory card got full. A week later, after softball practice we ran our mile to end the practice. between my twin and my older sister, all of us also being marathon runners, we race to see who can win first. I came back and felt slightly more short of breath than normal. So I decide to make a recording. I get in the car to go home and sit on the recording and waste a recording. I sit down to take my cleats off on the garage, and waste another recording. So I decide to call in my recordings in case I needed em the next day and had no room to record. The tech says "I'm going to ask you to hold on while I get the doctor on the phone to talk to you." I can't believe how naive I was, but I just said "Ok!" like it was no big deal. Doc asks my name, date of birth. I reply. Then his next questions struck me off guard. "Are you nauseous? Can you see ok? Are you short of breathe or have pain in your chest?" "uuhhh...no, I'm actually just getting ready to eat dinner." So he yells quickly, "NO, dont eat, put one of your parents on the phone now."
He then gave my dad instructions to go to ER and that he had called to make sure a bed was available and reserved for me for when I got there. So we pack up quickly and go. we get there and I'm hooked up to a heart monitor/ECG immediately, and nothing much was said. I decide to go to sleep since I had school the next day.
1am comes along and I'm being woken up by a nurse in an air-med uniform. She says "Wake up! we've gotta get you to the plane." So of course I'm like, ok cool I get to get on a plane! I'm driven by ambulance to our local airport. Im then put on a med-evac plane. and head out to UNM. the next day I have an EP study done with no results. So we stay up there for about 2 weeks then come back home.
Years down I'm being helped by medications, and they start killing my kidneys being on them long term. So we decide that we need to do another EP study and try to reach a diagnosis to get me off of meds. We decide the next step is to send me to Stanford Univ. for treatment. So we do. Then we learned that I had AVNRT only 30 minutes into the procedure (There was a clock I could see in the cath lab, I refused to go under, so I was under conscious sedation). We celebrated, I was given a cryoablation (they froze the tissue instead of cauterizing it). And that was that....
Freeze frame of fluoroscopy of my catheterization. They were awesome and printed it
for me because I told them my mom is a scrap booker.
...3 years later, here I am, typing this telling you that the ablation only lasted this long, and ended up not being a long term cure for my disorder. So now ill be fighting to advocate for myself the medical care I need in conjunction with my cardiologist.
I have one appointment down, and plenty more to come...
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