From the time I was diagnosed with Hereditary Angioedema (HAE) at the age of thirteen, I have tried to become more in tune with my body and my triggers. Before I was diagnosed, I did not know what was causing me to swell or for me to be doubled over in pain for three days. Now that I have a diagnosis and a better understanding of my condition, I know that stress/anxiety, physical exertion, and menstruation are all big triggers for me. Having this knowledge allows me to do what I can to prevent attacks. However, I am still continuing to learn more about my HAE diagnosis, which treatment plan works for me, and what causes me to have attacks. While I didn’t understand it then, learning to be in tune with my body and my HAE ultimately revealed something unexpected that resulted in a drastic medical change in my life.
One evening in early 2016, I started having slight abdominal attack symptoms as I was getting ready for bed. It started with a slight discomfort in my stomach, so I wasn’t sure if it was an HAE attack or something else. In a matter of minutes, my symptoms got increasingly worse, to the point that I was extremely bloated, throwing up, in pain, and stuck in the fetal position. I knew something was wrong.
This was one of the worst abdominal attacks I’ve had since I was diagnosed, and I couldn’t determine a trigger. I had my mom drive me to the emergency room, along with my IV acute therapy. We reviewed my diagnosis with the emergency room physician, nurses, and staff, and explained that I needed assistance administering my IV acute therapy. We told them that once the therapy was administered, my symptoms wouldn’t get worse and should progressively get better.
I received my on-demand medication and waited to see if my symptoms would get better. After an hour, I had no relief. This wasn’t the first time I needed to administer a second dose of my medication, so I didn’t think very much about it. I just thought this may be another one of my “really bad attacks.” Some time passed, but my symptoms didn’t go away, so the second dose was administered, along with some pain medication, and I waited another hour. I received some relief, but not what I would expect after two doses of rescue medication. The emergency room physician suggested that I be sent for a CAT scan to determine if something more was going on. After being sent for the scan, I started to feel a little more relief, and I was hoping that my rescue medication was finally working. However, I still wasn’t fully back to normal like I usually would be at this time.
My scans came back with no abnormalities, just the normal swelling you would expect from an HAE attack. Again, we all just thought this may be another one of my “really bad attacks.” I was packing up my stuff to go home and about to start the process of being discharged when the head of radiology came in. He explained that he took a second look at my scans and saw symptoms that aligned with appendicitis, and that I needed an emergency appendectomy that night. I didn’t know whether to be relieved or scared. I received the appendectomy and started the recovery process.
Through my recovery, I realized that my body was talking to me. My HAE was telling me that something more serious was going on
internally. It now made sense to me why my attack symptoms weren’t getting better and I wasn’t recovering from my attack as quickly as I would have before. While this was my experience, it’s important to remember that everyone’s attack frequency, attack triggers, attack severity, and recovery process is different.
I encourage all individuals with HAE to continuously work to be in tune with their bodies and keep a journal of each attack and its potential triggers. This may help to establish if you are having an HAE attack as a result of a trigger, or if something more is going on within your body. Doing this has helped me along my HAE journey to indicate potential triggers that I may have not even realized.
I can’t even begin to explain how thankful I am for modern HAE therapies. Before being on prophylactic medication, I was extremely cautious about the activities I would partake in or the places I would travel to, as I was always anxious that it would trigger an attack. It was almost like I was living in a bubble, unable to be myself or enjoy life. With the help of preventative medication, I am now able to live life without the burden of an attack and not restrict myself from doing the things I love to do. I am able to snowboard in the winter, travel, and even have played varsity lacrosse in highschool, all without fear of an HAE attack. While I am still cautious about what triggers my attacks, I keep up with my preventative medication and treat swells as soon as symptoms arise. I don’t let my HAE diagnosis define who I am!
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