Living with Hope, and Never Giving Up
By Jackie Duda – Carrying on strong with osteoporosis
Jackie Duda
Back in 2015, after my first DEXA, my primary care provider announced, “You have osteopenia. Your bones are thinning.” I was only 52.
I dismissively waved my hand, more concerned about the multiple health conditions I was juggling and a weakening pelvic floor and left hip that had rendered me mobility challenged and exhausted. I also have Crohn’s, Hashimoto’s Thyroiditis, P.O.T.S., and Ehlers-Danlos Hypermobility. I was using a mobility scooter to go the distance whenever we shopped or did activities with the family. “I’ll take more calcium and Vitamin D,” I assured her, and would try to be more active. It didn’t work. My recent DEXA T-scores were -4! My endocrinologist/bone specialist at Johns Hopkins was alarmed, which alarmed me. Me, a once dedicated “gym rat” who used to work out three times a week, swim, and run 5Ks until my health conditions worsened and I had to give up my writing career when I became fully disabled in 2011.
My primary care provider dutifully scheduled a DEXA every two years. I crossed over into osteoporosis territory in 2017, and a rheumatologist said he could give me a bone medication injection right then and there. I was scared, knowing little to nothing about the medication, and what I did read seemed foreboding for my jaw. I had periodontal disease and since Medicare doesn’t cover dental work, and my secondary coverage, Medicaid, only covered $800 worth of services annually, I dragged my heals and put off treatment, despite the urging of my primary care provider. And then a new rheumatologist put me on Prednisone to treat mixed connective tissue disease, which really degraded my bones. We didn’t have the money to cover dental care with my disability and my husband’s worsening health issues that forced him to give up his job in 2018. And we still had kids in high school and college.
In May 2019, right before our youngest daughter’s high school graduation, I was making the bed, pulling the sheets up. I heard a “pop” and fell to my knees gasping for breath. A chest CT revealed a fracture in my thoracic vertebra. After we moved in the summer of 2019, and the pandemic set in, a few more fractures appeared. And mild kyphosis. By May 2021, I was nearly bed bound and had a tooth abscess. I had two teeth pulled at a low-cost dental clinic. A week later, I underwent kyphoplasty for two vertebra, and wound up with microscopic amounts of cement in one of my pulmonary arteries. It’s stable, a skilled vascular surgeon at Medstar Washington Hearth Hospital in DC said it “endothelialized,” embedded itself like a rock in mud in a riverbed and shouldn’t cause any issues. Traveling cement is a known risk for kyphoplasty, as the lungs are very close to the spine. The cement was incidentally discovered on a CT scan after I went into septic shock from a perforated colon caused by undiagnosed diverticulitis, the same week I had the kyphoplasty procedure. Near death, blood pressure dropping like a stone, I was intubated and put on a helicopter bound for R. Adams Cowley Shock Trauma in Baltimore, Maryland. Half of my colon was removed, and I had a temporary colostomy until the takedown surgery in December 2021.
Septic shock caused half my hair to fall out and destroyed my teeth. In March 2022 my daughter Elise and our friends launched a GoFundMe to raise $10,000 to cover the dental care I needed to avoid another abscess and possible reoccurrence of sepsis, and to finally eliminate the dental issues that had posed a barrier to my getting osteoporosis treatment.
My physical therapists used aquatic therapy to help me get stronger after the devastating surgeries. I had to strengthen my back muscles, pelvic floor, and core, which had been sliced and diced and rearranged like outdated plumbing the year before. Exercising in the water made me stronger, faster, and something about losing half my colon enabled me to walk better and for longer distances. We donated my mobility scooter in May 2022. I’m walking 5 to 8 miles a day now and lifting weights safely using EGYM machines and swimming at our YMCA three days a week. I had a VFA scan at Johns Hopkins recently and my endocrinologist/bone specialist has put me on a daily bone building injection for two years. Then I’ll go on a once-a-year maintenance infusion. For the first time in years, I’m feeling better about the state of my bones (and teeth – in 2023 Medicaid removed the $800 annual cap on services, and they’ll cover crowns and root canals). I also take Vitamin D3 and eat a diet high in protein, calcium, and fiber. I’m even back to freelance writing again, part-time. I’m doing everything possible to rewind time. I plan to have these bones carry me through the next few decades of my life.
This story is part of a support initiative of the Bone Health and Osteoporosis Foundation called Voices of Osteoporosis: Stories of Hope and Inspiration. If you have experienced osteoporosis as a patient or caregiver, we invite you to share your story. Your story could inspire others to learn how to protect their ability to live their best life and stay bone strong. Click here to learn more.