My story 22 years later.

Personal stories of individuals and families affected by Kawasaki disease
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My story 22 years later.

Post by AJThrasher » Thu Sep 26, 2013 4:54 am

So most of this is what I've been told from family as I don't recall a lot of what occurred.

For demographic purposes, I was born and raised in Nebraska in your typical Midwestern Caucasian family. I was about 5 years old when I became extremely ill. My mother took me to our family doctor who insisted, multiple times, that it was just the flu. My symptoms were: jaundice, red eyes, swollen everywhere, skin peeled across my entire body (Mom says it was so thin and raw she could see the veins popping out everywhere), strawberry tongue, red cracked lips, severe vomiting fever (At times at and over 105), and no energy to even walk.

I distinctly remember a time where I woke in the middle of the night, started vomiting in bed and continued, making a trail, all the way to my parents' room. Another time I was on the couch, but didn't have the energy to move and I just vomited on myself.

At some point my mom carried me into our family doctor's office who refused to see me claiming my mom was just a crazy lady not listening to his medical expertise. My mom was stubborn however and continued to act crazy in the lobby. The staff was threatening to call the police when a nursing student came out to look at me. Luckily she was writing her thesis on Kawasaki's Disease, took one look at me and instructed my mom to take me to the ER.

I spent 17 days in the ICU. I only have 3 memories of the ICU experience. I remember being hauled into a room and strapped to a rotating and tilting table where they pumped me full of some chemical so they could get good visuals of my heart. I also remember drinking this really thick milky chocolaty substance, but I don't know what it is. I also remember being in the room when the doctors had pictures of hearts and were explaining to my parents what was going on, but I don't know what they were saying. And lastly, I remember my dad sculpting a stegosaurus out of snow; he was always good at sculpting snow creatures.

For months and even years following I had regular checkups with a cardiologist and was put through some stress tests occasionally with the most recent one being about 10 years ago. There were some times after I came back from the hospital that I vomited, but it wasn't nearly as violent or lengthy. They always caused the family to stop what they were doing and come running though.

I'll be 27 in a couple weeks and I live a very active life style. I'm in the Navy, I climb mountains on the regular, rappel, and rock climb. This year I've run in the Warrior Dash, Spartan Run, 2 Tough Mudders, Makahiki Challenge (Similar to the Warrior Dash), 7-ish 5ks, 1 10k, 1 15k, 1 20k, 2 half marathons, 1 25k, 1 30k, and I'm running in the Honolulu Marathon this December. I also have a personal trainer and actively train in the gym several times a day. Baseball, Football, Ultimate Frisbee, and Soccer are all activities I participate in regularly.

I need to talk with my mom more about this as she knows all the little details.

There are a few things I have noticed however. I never get sick. Maybe once every 5-ish years or so, but when I do get sick, I'm usually down for about 3 weeks to a month.
My average internal body temp is around 97, sometimes in the 96s, but externally I'm like a furnace.
Every once in a while, usually happens a couple times a week, my heart feels like it almost stops and then it's followed up by a couple quick, deep beats that cause a warm feeling to surge across my entire body.
A couple times a year I'll get a real sharp stabbing pain in my heart. It doesn't last long, but it makes me stop what I'm doing entirely. I always grab for my heart when this happens because the pain is so great. If people see this occur they always go silent and stare at me like I was just shot.

I credit my survival ultimately to the nursing student and my mom being a stubborn crazy lady, lol. The cool thing about the nurse though, years later we met again. Turns out she married my allergist.

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Re: My story 22 years later.

Post by Momcat » Sat Oct 19, 2013 1:41 am

Seems like you might want to get an echo and stress test done to understand those pains. Did you ever have an angiogram?

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Re: My story 22 years later.

Post by cmorey81 » Mon Oct 21, 2013 4:12 am

I am a fellow KD survivor, I had it before I turned two and I've made it to 32. I rarely get sick, but when I do it's awful! It's funny you mention the body heat issue, I also run normal temps but my husband says I feel like I'm on fire lol. I wonder if other KD survivors experience the same?
I have been active my whole life although runner's asthma has prevented me from becoming a runner. I did a Warrior Dash as well though. Recently, since my husband was stationed in HI, I have been experiencing chest pains. All the simple tests ( blood work, chest x-ray, stress test) have come back fine though. So, regardless of the pains still occurring, they say I don't need anymore testing. They say it must be anxiety or acid reflux because I'm far too young to have heart problems....
That being said, you should get your heart checked out.

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Re: My story 22 years later.

Post by kkedigs » Fri Jul 11, 2014 8:29 pm

Fellow KD survivor as well -- I am a 23 year old woman and I was 4 and a half when I had it -- I experience the opposite in terms of body temp-- I am always told that my hands are like ice and my feet are also freezing a lot of the time. I don't work out, but I have an active job (I'm an archaeologist) and don't eat unhealthy. I do smoke, though.

I also have stabbing heart pains -- not frequently, and if I am with someone and they notice, I explain it and they say it's either a muscle spasm (ha, no...) or my lungs. I can run a 7 minute mile (not amazing, but not terrible) so my lungs surprisingly enough are not that bad. I had a 32 (?) slice CT scan of my heart in my teens, and they said one of the valves was interesting but that there was nothing wrong with it. At the doctor's office my blood pressure is generally low. Never high.

But still, After reading all of the stories on here and this one, my concern is growing. Thinking of participating in a study at UCSD...

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