cystic fibrosis, healthcare, Medical Education

MedEd Story Time: On Being an Advocate

Today’s story is a short one, but it’s a story of a physician who saved my life by keeping his ears open. If you’re new here, I’m a cystic fibrosis patient sharing stories of medical successes and failures in the hopes of giving you something to bring back with you into the hospital and clinic.

My first team of doctors was not a good one. I’ve read the records myself with today’s knowledge and just trust me: they were not good. Even with the knowledge of the early 90s, they were not good. I was rapidly deteriorating as a toddler, and even though my parents continued to bring me in for sick visits, my doctors refused to intervene because “that’s just what happens” with CF. They didn’t hospitalize me, or even give me oral antibiotics.

My grandmother was a volunteer at a CF center in another state. Now, I want to set the stage here. She was a wealthy person in town and she planned CF fundraising events – her privilege is important here. I assume that’s how she had the ear of the doctors at this center. Nevertheless, she told the doctors about how sick I was. One of them perked up and started asking why a 3 year old would be so sick and didn’t like the answers he was getting. He offered to treat me. My parents were desperate at this point. I was coughing to the point of puking and would barely eat, so we came to this center, they treated me properly and reset me to a good baseline, and we fired all my doctors and started over in my home state.

My grandmother is a force of nature – if she wanted that doctor to listen to her, he was going to. But if he hadn’t really listened, I don’t know that I would be writing this right now. My parents were new to the medical system, and while this was the defining experience that taught them to fight tooth and nail for good care, they weren’t there yet. Many people never get there. I would bet that you will come across similar opportunities – things that just don’t feel right where you know you can make a difference. Don’t be afraid to step on some toes or do something a little unconventional if you think it’s warranted. Advocate for your patients! Refer them to a colleague you like, argue with a colleague you disagree with for them, help them navigate the medical system, do extra research to help solve a problem – your have immense power as a physician beyond diagnosing us and using your prescription pad, and I hope to see you use it.

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