In 2018, she was diagnosed with Avascular Necrosis (AVN) after experiencing severe knee pain that puzzled both her doctors and family. AVN is a rare disease that affects only a small percentage of Americans each year, and unfortunately, many physicians are not well-versed in its diagnosis and treatment.
Sarah-Marie’s struggle with AVN was further complicated by her long-standing battle with anaphylactic asthma. Steroids, both oral and IV, have been a standard treatment for asthma, but they have also been linked to the development of AVN. Despite this, high doses of steroids were unavoidable during life-threatening asthma attacks. This led to a difficult decision to bring her back to her parent’s house for daily care.
When it became clear that Sarah-Marie needed specialized treatment for her AVN, her family turned to Mayo Clinic in Rochester, MN. However, before the evaluation process was completed, another severe asthma attack occurred, requiring the use of a ventilator. Despite the setbacks, she was eventually accepted to Mayo Clinic and evaluated by both the Pulmonary and Orthopedics Departments.
The team of doctors at Mayo Clinic determined that Sarah-Marie was already at the peak of pulmonary care, but she needed a bone marrow transplant into her knees to address her AVN. However, every time she got close to the goal of requiring 10mg of oral prednisone or less per day, another asthma attack would occur, starting the cycle all over again.
In 2019, she had sixteen ICU stays due to asthma, and each stay required high-dose IV steroids that significantly impacted her AVN. Her pulmonologist urged her to move to the Gulf Coast to see if the salt air would make a difference, and it did. Sarah-Marie’s care was transferred to Mayo Clinic Jacksonville, where she was told that the delay in getting a bone marrow transplant was too long, and knee replacements were her only option.
In 2020, it was discovered that Sarah-Marie had over five vertebrae fractures that had to be stabilized before any knee surgery could be performed. Additionally, she was diagnosed with posterior subcapsular cataracts caused by high-dose steroid use, which interferes with reading vision, reduces vision in bright light, and causes halos.
In January 2021, Sarah-Marie contracted Covid-19 Alpha and was not expected to live. But through a clinical spiritual miracle, she was discharged 10 days later, after only 4 days on the ventilator.
Sarah-Marie’s Hematology team continues to work on improving her immune system with monthly IVIG infusions.
She has also been diagnosed with Adison’s Disease, another consequence of long-term steroid use.
In July and October of 2022, Sarah-Marie underwent neurosurgeries at Mayo Clinic Jacksonville to stabilize her spine with “railroad track” titanium rods and over 25 screws from T3 to L2.
Sarah-Marie finally had her first joint replacement in January of 2023 and has two more scheduled in June 2023 and winter 2023/2024.
Sarah-Marie uses a wheelchair for any distance greater than approximately 50-feet, but inside her home, she can ambulate with only a walker.
She struggles daily with debilitating pain and fatigue and covets your prayers as she continues to seek God’s grace, mercy, and wisdom – one day at a time.
(Visit www.LifeInTheBlinkOfAnEye.com to read Sarah-Marie’s thoughts as a chronically ill patient walking through this life.)
