Despite a medication mishap, I was in the right place at the right time

“We must find a way to look after one another, as if we were one single tribe!” — King T’Challa (played by Chadwick Boseman) in the 2018 film “Black Panther”

My brain fog has been horrible lately. I can recall moments from a random day in 1988, but can’t remember what I ate for dinner last night. These short-term memory issues are currently my main symptom of hypoparathyroidism.

So, as ideas for my weekly column emerge, I jot them down on my calendar or a piece of paper so I don’t forget them. By adopting the habit of writing things down, I’ve gained a profound sense of control over my brain fog. Scraps of paper with random scribbled notes serve as memory aids for me and help me prevent cognitive decline.

For this week’s column, I had on my calendar: “Travel, pen break, Panther FTW. BB publish 10/15.”

You might be wondering, “What is that gibberish?” The note was a reminder of what I wanted to write about for my “Brave Butterfly” (“BB”) column that publishes Oct. 15. “Travel” refers to visiting my daughter in Atlanta in August, and the “pen break” was when my Yorvipath (palopegteriparatide) pen malfunctioned mid-injection. This daily medication is a crucial part of my hypopara treatment. I then had to reach out to my pharmacy, PANTHERx, which was able to help. (“FTW” means “for the win.”)

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The pharmacy’s swift and efficient response reassured me that measures are in place to ensure patients don’t go without their medication. Eighteen hours later, my medicine arrived in Atlanta, so I didn’t have to miss more than one dose.

I often say everything happens the way it should. Seeing that note on my calendar for this week’s column felt like foreshadowing, a sign of what was to come. Sometimes I wish these events were fiction, but it’s the journey I’m on, and I need to roll with the punches.

Foreshadowing

Earlier this month, I traveled to Texas for the International Hypoparathyroidism Conference. It was a powerful event that may require a series of columns, given all the innovations in treatment.

Usually, my anxiety is exacerbated by travel. However, after experiencing an inner transformation last month in New York City, I was committed to showing up at the conference. Being prepared is crucial, so I flew to Texas with extra medication, the location of the nearest hospital, notes about my condition, and my doctor’s contact information.

I also knew that if I were to get sick during the event, two of my endocrinologists would be there, along with multiple pharmacists, advocates, and researchers. Even in the worst-case scenario, I’d be in good hands. As a result, I had no anxiety during this trip. It was so nice traveling without that extra baggage!

On my third day in Texas, I went about my morning routine, which included injecting Yorvipath. But when I administered the dose, my device malfunctioned, as it had in August. I wasn’t upset, though; I had the best support system right there with me.

I walked up to the PANTHERx table and spoke with three representatives, who immediately whisked me away to a conference room to address these issues.

I was grateful to share this malfunction in real time with a caring team that offered unwavering support and empathy. They witnessed firsthand a patient’s experience with a malfunctioning device, as well as the ramifications of missing just one dose. (I became a very different version of Bari!) They described it as “eye-opening.”

Over the past few days, the pharmacy has continued to go above and beyond for me. I’ve received check-in calls, expedited deliveries, and reporting to the proper channels. I was truly in the right place at the right time.

I am grateful to PANTHERx, which has now saved the day for me twice. Their response was a testament to the importance of a strong support system for anyone managing chronic illness. I feel so lucky that PANTHERx is my specialty pharmacy. This brave butterfly will continue spreading her wings of hope, finding the silver linings in things outside of her control.

Note: Hypoparathyroidism 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.