Be Your Own Best AdvocateAuthor: Diplomat Pharmacy Date: January 02, 2020
As a child, being sick was all Heather ever knew. “I missed a lot of school when I was younger and had many overnight stays in the hospital,” Heather said. “I stayed at my grandma’s house on school days because my parents worked full time and she would take care of me.”
Despite constant illnesses and hospitalizations, no one could explain Heather’s symptoms and why she was always getting sick. In elementary school, Heather remembers having a spinal tap done because doctors believed she had spinal meningitis. She was missing so much school from being sick, she was in jeopardy of being held back.
Finally, at age 29 — and after three hospitalizations for pneumonia — Heather received some answers. She was diagnosed with alpha–1 antitrypsin disorder, also known as AAT deficiency, an inherited condition that affects the liver and lungs. Her diagnosis introduced her to Diplomat.
Becoming an Advocate
When Heather was diagnosed with Alpha-1 antitrypsin deficiency disorder in January 2015, she became a Diplomat patient. Diplomat assigned a consumer advocate to Heather to help her adjust to her new diagnosis. Her advocate, Tamara, helped Heather navigate complex health insurance issues, and order and schedule all drugs and supplies for her treatments. She also helped Heather and her family learn more about AAT deficiency.
Inspired by the positive impact Tamara had on her life, Heather decided to make a career change. “About a year after beginning infusion treatment ... I started working with Diplomat as a consumer advocate for patients living with alpha–1.”
During her training, Heather learned more about the rare and chronic conditions Diplomat supports. “I remember hearing about primary immunodeficiency,” Heather said, “and I thought, ‘this sounds like me.’” But because she had just been diagnosed with AAT deficiency, Heather didn’t press the issue, even though she still felt something was wrong. “I kind of just brushed it off. What were the chances of me having two rare disorders?”
Three years after Heather joined the company, her mother also applied for a position. Similar to her daughter, Heather’s mom was trained in some of the disease states Diplomat specializes in supporting, including primary immunodeficiency disorders, or PIDD.
“My mom reached out to me and said, ‘Heather, I think you have a primary immunodeficiency,’” Heather remembered. “I knew I needed to look further into this.”
Advocating for Herself
With her mom’s support, Heather reached out to a coworker, asking for information about how to get tested for PIDD. Once she knew what blood tests she needed, she met with her primary care physician. “I took the information to my doctor and told her this is what I want to be tested for,” Heather explained. Initially, Heather’s doctor brushed her off, saying that there could be several reasons Heather was experiencing so many infections, and that she didn’t think Heather had PIDD. Her doctor also cautioned that testing for PIDD was expensive and that the costs usually aren’t covered by insurance.
“Normally, I would have accepted this answer. My doctor knows best, right? But as an advocate, I’ve learned that I need to advocate,” said Heather. “So I insisted I be tested.”
A day later, Heather received her results, confirming that she did have a primary immunodeficiency disorder known as common variable immunodeficiency (CVID). CVID is one of the most commonly diagnosed primary immunodeficiencies, especially in adults.1 “My tests showed that my levels were so low, it was almost as if I didn’t have an immune system at all,” Heather said.
A New Normal
Now with a complete diagnosis, Heather started receiving a monthly IV infusion for CVID in addition to her weekly infusion treatments for AAT deficiency. Since starting her therapy for CVID, Heather hasn’t had a new infection since January 2019. “This is the longest I’ve gone in my life without getting an infection. As a child, I was constantly in and out of the hospital.”
“I feel like I owe Diplomat so much,” said Heather, “because without first being a patient and then an employee, I would not have been diagnosed.” “I feel like someone should have caught this sooner, but it never was. And I don’t think it would have been without Diplomat. I just feel so grateful to this company for ultimately saving my life.”
If you think you might have a chronic condition, Heather stresses the importance of listening to your gut. “Doctors are great and they can offer medical knowledge, but we know our bodies better than anyone,” she said. “Don’t take no for [an] answer. If you feel strongly, make it known. Get second and third opinions if you feel you aren’t getting the right answers. You are in control of your health.”
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