It means that I have to cancel my plans sometimes.
It means I am in unimaginable pain.
It means I have to inject myself.
It means I have to take time to recover.
HAE stands for Hereditary Angioedema, a rare genetic disorder that causes swelling as a result of an attack most notably in the abdomen, hands, arms, genitals, and throat. Attacks are triggered by any number of things such as stress, dental procedures, flu, and more. There's more that we may not even know about yet.
It can be deadly if there is swelling in the throat as the swelling tends to happen rapidly over the course of 2-5 days and completely closes the airway.
I tend to swell in my abdomen during my attacks. This means my intestinal tract swells until its completely blocked and stays that way untreated for five days.
Luckily, medication has been developed that helps me manage the swelling and stopping it in its tracks. However, it does not reduce said swelling that has to go down on its own. Additionally, this medicine costs roughly $11,000 a shot but tends to come in packs of three so the sticker price is roughly $33,000.
I struggle with that sticker price when I am facing an attack. I end up weighing my options, do I inject myself with $11,000 worth of medicine that I depend on or do I risk the pain and hope this attack won't land me in the hospital and can extend the life of my medicine. But that can be a really dangerous game. The consequences of not using treatment can be extremely painful as I saw from my first attack.
During my sophomore year of college, I called my parents for advice after I had been throwing up in my dorm room every hour for three days straight and could not secure an appointment at my school’s health center. My mother urged me to go to the health center anyways and demand to be seen. My mother then received a call an hour and a half later that I was being rushed to the hospital for either appendicitis, ovarian cysts or something far worse. After spending 10 hours in the ER on a couple of bouts of morphine I was released with a general diagnosis of inflammation in my abdomen and given some antibiotics.
The cost of the medicine alone is the cost of a mortgage not to mention the price for the ambulance, the emergency room and so on should that medicine not work or as an alternative to the medicine altogether. If the insurance company decided they didn’t want to cover the medicine I’d be screwed. I would end up in the hospital all the time and never be able to afford those bills.
The need doesn't go away just because the insurance companies stop paying for it.
HAE for me is painful, hard to explain and constant negotiation of the healthcare system.