Monthly series featuring personal accounts navigating our healthcare system
Growing up and all the way through college, my favorite part of the “Pyramid Diet” was near the pyramidion, or the top of the pyramid for non-egyptologists. Pizza and ice cream were some of my favorites, particularly buffalo chicken pizza from my hometown pizza joint. In my mid-twenties (but still eating like a college student), stomachaches and nausea suddenly became a daily occurrence. I was also regularly upchucking in public, which was totally embarrassing and I owe a few DPW workers a beer or three for the trouble.
It got so bad, I was forced to see a doctor. Something must be very wrong for a 25-year-old to want to go to the doctor’s office. After the physical examination, a referral to a GI specialist was next. Sitting in the GI’s office, I peered over to his computer screen after explaining my symptoms and saw a massive list of tests for me to take, all of which came back negative, including a full inspection of my GI tract a few months later.
One suggestion from the GI changed everything: Stop eating dairy.
Suddenly, I was way more conscious of my diet, and things were returning to normal, sans pizza and ice cream, which was somewhat tragic to get over. The diagnosis was simple: lactose intolerance.
A few years of avoiding milk like the plague went by.
One day I was exploring the idea of lactose-free cheese (like sharp cheddar), thinking maybe I didn’t have to give up pizza after all. After some research into lactose-free hard cheeses and a trip to the grocery store, I decided to give it a try. What’s the worst thing that could happen? I get sick like before, but now in the comfort of my own apartment?
Two slices of cheese later, something was very off. I started to see hives on my arms and it was getting harder to breathe. I started to panic, uh oh, this may be an allergic reaction. My throat was closing and I started wheezing. I’ve heard before that Benadryl is what you should take at moments like this. I emptied a first-aid kit right onto the counter and found Diphenhydramine which, after a quick google search, I confirmed was Benadryl. After about 4 of those, my breathing was back to normal and I thought maybe I should drive to the emergency room.
In my panic, it never occurred to me to call 911, which I was scolded for by every medical professional I have told this story to. After a trip to the allergist, the diagnosis was changed from lactose intolerance to milk allergy and I’m now a permanent card-carrying member of the EpiPen club. I had taken an allergy test during my first trip to the GI, which came back negative, but this time I was on the Anaphylaxis tier of allergy. The test revealed that I am also allergic to cats. Apparently allergies can pop up at any time of your life and every medicine cabinet should have Benadryl.
Through this whole episode, I got a crash-course on the US Healthcare system, a sense of empathy for the sick, and an awareness of allergens in everything that we eat. Referrals, deductibles, medical bills out of nowhere, prior authorizations, HMO plans, data from tests, data from what I’m eating, the cost of going to the ER, and the cost of an epinephrine auto-injector being ~$600!!!! Gah!
Since then, I decided to apply myself to fixing whatever I can in healthcare, however large or small. The son of an engineer and a registered nurse, this focus especially thrills my parents. Coordination is the name of the game for everything from allergen statements on nutrition labels to interoperability in data. If all of the Lego pieces have the same interfaces, we can build something greater for all, faster and cheaper. I have a particular interest in interoperability, working with HL7 and FHIR®, something right up 1upHealth’s alley. But the thing that I love best about working in health tech is the sense of mission. The fact that I am helping people is totally rewarding.