Life before and after a major calcium crash, when everything changed

Note: This column describes the author’s own experiences with Natpara (parathyroid hormone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

“A journey of a thousand miles begins with a single step.” – Lao-tzu

In 2016, after I experienced a life-altering calcium crash, my endocrinologist would often remind me that I’d been just four minutes away from death due to the crash. A few months after that, my endocrinologist retired. It was a scary time for both of us.

In addition to finding another endocrinologist at Massachusetts General Hospital, I contemplated other avenues of improving my health. That calcium crash changed me. It forced me to reflect on my decision to be treated with Natpara (parathyroid hormone). While Natpara had been effective at times, I eventually learned that it has a short half-life, which resulted in me feeling terrible about 12 hours after an injection.

My life is divided into two eras: before and after Natpara. Although I didn’t feel remarkable before, I also didn’t experience self-pity about my health issues. While they were part of my identity, they didn’t define who I am.

From 1998 to 2016, aside from a thyroidectomy and childbirth, I had to go to the emergency room only twice, resulting in lengthy hospitalizations due to my hypoparathyroidism. Yet, I was OK. I was a super mom, always having kids over, hosting parties, and being very social. Most importantly, I didn’t feel despair. Just take my calcium and I’ll be fine, I thought.

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I was on Natpara for a year. I traveled and lived a somewhat healthier life. Due to an issue beyond my control, I missed two days of injections and didn’t have a backup plan. I didn’t know I needed one, as I thought Natpara was a cure for hypopara, which I soon discovered was not the case. It was merely a bandage. My life hasn’t been the same since that day back in 2016.

Before Natpara, I was pretty stable. I did have periods of hypocalcemia (low calcium levels in the blood) and hypercalcemia (high calcium levels in the blood), but I just thought it was par for the course and had gotten used to it. When the U.S. Food and Drug Administration approved Natpara in 2015, my endocrinologist suggested we try it due to its many documented benefits, including improved kidney function, quality of life, and a reduction in the required amount of oral calcium. “Sign me up!” I said, because it sounded like a dream come true.

However, after that crash in 2016, I experienced sensations I’d never encountered before. Nearly 20 years after being diagnosed with hypoparathyroidism, I finally felt the burden of illness. I also realized how uneducated I’d been about hypoparathyroidism.

Surprised by acupuncture

From 2016 to today, I’ve had to go to the emergency room dozens of times, and I’ve spent more nights in the hospital than I can count. Every time I go to the hospital now, I feel intense anxiety. I suffer from post-traumatic stress disorder due to the calcium crash, during which I coded. Last year, my mom was hospitalized, and every day that I walked into that hospital my heart would race and I’d have flashbacks.

Reluctantly, in early 2017, I started getting acupuncture. I thought it’d be a waste of time because there is no cure for hypopara. I disliked it at first, as it seemed ineffective. But after missing a couple weeks of it, I became very sick — not from hypopara, but from the flu, which eventually caused my calcium levels to drop and my hypopara to act up. I thought that maybe this acupuncture thing was working after all.

Today, I pay out of pocket for weekly acupuncture treatment, as my health insurance plan doesn’t cover it. Yet I understand how fragile life is, so I’d do anything to feel better. Like clockwork, I visit Evolve Acupuncture and Wellness every Monday morning, where Kimberly Marrone works her magic. During each session, she plays Deepak Chopra’s Chakra Meditation while I turn off the outside world, decompress, and somehow heal with less painful needles than my daily Yorvipath (palopegteriparatide) injections! Each week is a new beginning, a fresh start to be better than I was the previous week.

Explaining what acupuncture does can be challenging, but during my sessions, I experience profound healing of my mind, body, and spirit. Although it doesn’t affect my calcium levels, acupuncture does help me reset, release my anxiety, and anticipate a new week while keeping illness and pain at bay. Afterward, I go home and enjoy a relaxing day of lounging.

I spend a lot of time at home, and writing this column is another healthy habit, as it also serves as therapy. It illuminates my journey and reminds me how far I’ve come. I hope for a brighter future with the evolving landscape of hypopara advocacy and research.

Although some days are more complicated than others, even on the worst days, I remind myself that it’s almost Monday, and this Brave Butterfly will continue to spread her wings of hope.

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.