A caregiver’s role when facing the ‘boss levels’ of HAE
As in video games, we must apply our learned skills to new challenges
Written by |
Every adventure or fighter video game has the ultimate level. It doesn’t matter if it’s something as complicated as Isshin in Sekiro, as pattern-based as facing off with Mike Tyson in Punch-Out!!, or as timing-intensive as defeating Bowser in Super Mario Bros.; video games with boss levels test skill, persistence, and sometimes emotional stamina.
Although I wouldn’t be considered a gamer, having lived through several generations of consoles and games, my favorite boss levels are those that test every ability the player has learned leading up to the final fight. Oftentimes, games start with minor battles, where the main character gains new skills as the difficulty increases at each level. In those cases, while the big boss levels are challenging, the player doesn’t feel totally unprepared.
And then there are those other “big boss” levels that a player seems destined to lose if they don’t pick up the one small thing needed to win the battle. It’s that one step that seems almost skippable that can ruin the progress of the entire game.
It’s funny how life can feel like a video game. Each year brings its own new challenges to which we can apply our learned skills. Sometimes specific adversities arise and bring with them big-boss qualities. However, no such level seems to require more applied skill than the hereditary angioedema (HAE) level.
Facing off against the big boss
When our daughter, whom we lovingly refer to as Ladybug, was diagnosed with HAE, it felt like the final level of a challenging video game we had never played. We didn’t understand the rules, had no tools, and were oblivious to the “player guides” that we would rely on later.
Thankfully, we were able to go through training levels with incredible nurses when Ladybug’s life wasn’t at stake. We were granted the “emergency elixir” when she faced life-threatening flares. We were even given an abundance of sustaining maintenance doses, so our hero wouldn’t always be in danger.
After a while, this HAE level didn’t seem too bad. I thought we had a handle on things. And then we reached another boss level: dental work.
When Ladybug received her braces, I mistakenly failed to pre-dose her with Berinert (human C1 esterase inhibitor) before the routine procedure. Unfortunately, within days, we found ourselves in the emergency room, which led to a hospital stay, because I hadn’t heeded the warnings that dental procedures were a boss level.
Thankfully, it was a lesson I only had to learn once. Before every subsequent orthodontist visit, I pre-treated Ladybug to avoid the severe swells that often followed. But soon, we would face another big boss of dental work, especially for an HAE patient: wisdom tooth removal.
Last August, during a routine X-ray, Ladybug’s orthodontist discovered that her four wisdom teeth were about to become a serious problem. He predicted that by December, she would be in significant pain and they would need to come out.
His prediction’s accuracy blew our minds.
Because of the complicated placement of all four teeth and the extension of the removal, Ladybug’s orthodontist, her HAE specialist, and the oral surgeon concluded that the best place to perform the procedure was in the hospital operating room. There, they would have everything they needed in case she experienced a laryngeal flare.
I was thankful that these amazing people would be the ones to face the big boss. My only job was to ensure she received her “emergency elixir” before surgery, a skill set I had already developed through previous dental visits.
As a caregiver, sometimes it’s not about the big battles we have to fight; we can leave those to the incredible team of nurses and doctors who are trained to handle them. Our job is to do one little thing to give our patients a fighting chance.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
Leave a comment
Fill in the required fields to post. Your email address will not be published.