Every HAE caregiver needs to ‘review the recipe’ before treatment

Years before my mother passed away, she shared with me the “secret” recipe for her savory Thanksgiving dressing.

Although the recipe has multiple steps, it’s very simple. Like most traditional African American recipes passed down through families, the bulk of it doesn’t use exact measurements. There is one step that must be done correctly, however, or the finished product will be a failure.

Initially, because I didn’t want to miss any steps, I wrote all of her instructions in my recipe journal, carefully highlighting the parts not to get wrong. Sure enough, when I made it for the first time, it tasted exactly like hers.

After her death in 2013, when the extended family gathered for large dinners or holidays, I was tasked with making “Mama’s Dressing.” Each time, I would sit and review the recipe before starting, to ensure I had everything right. Eventually, though, I stopped referring to the journal.

One year, after a hectic season of producing plays until the week before Thanksgiving, I was assigned to make dressing for a reasonably large dinner. Although I was preoccupied, I whipped up my mother’s famous dressing as I’d done every year.

But when I tasted it right before it went into the oven to bake, it was awful. In my haste to make it, I’d accidentally omitted the key step that had to be done correctly. How did I manage that? Well, I hadn’t taken the time to review the recipe.

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This is the part where I’m supposed to tie the story of Mama’s dressing to a lesson about being a caregiver for my daughter, who lives with hereditary angioedema (HAE). There’s actually many lessons.

There have been times before I’ve administered my daughter’s preventive medication when I’ve accidentally skipped a step. Other times, I’ve inadvertently reversed an action during the constitution of her emergency medication, which resulted in me having to follow a longer process to extract the sterile water from the vial.

Our daughter, whom we lovingly call Ladybug, was diagnosed years ago, but after all this time, when I don’t pause to review what I’m doing, it can result in longer steps, unplanned calls to the specialty pharmacy, or even a trip to the emergency room.

Thankfully, I was able to fix Mama’s dressing. Once I discovered the missing ingredient, I scraped the uncooked dressing back into the bowl and added it.

I work hard to remember that lesson. Just because I’ve been doing something for years, it doesn’t mean I don’t need to take a moment and go over it again. After years of administering meds, specialist appointments, ER visits, and reciting medication lists, it doesn’t hurt to take a minute to “review the recipe” before proceeding. It doesn’t mean I don’t know what I’m doing. Instead, it keeps it fresh in my mind and gives everyone a better experience.

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.