I Wasn't Ready to Read the Notes from My Doctor's Visit
For two years, I was seeing an asthma and allergy specialist. He came highly recommended after I had a serious asthma attack that required an emergency room visit.
I liked him. His approach followed the asthma guidelines-based care as recommended by the National Heart Lung and Blood Institute. Based on my allergy testing and IgE levels, he recommended I start allergy shots for dust mite, dog, and cat allergies. To ensure my treatment plan was working, I had a monthly appointment that included spirometry and FeNO testing, along with a physical exam and conversation time with the doctor.
In shock: He handed me notes from my last appointment
At the beginning of my second monthly visit, we were sitting in his office, and he handed me several pieces of paper. He said, “Here are the notes I took from your last appointment. Please review them now and let me know if you have any changes.”
I was caught off guard. I have never had a doctor hand me my medical records or their notes to review before. There it was in black and white. Medical terms like Status Asthmaticus. His opinion regarding my adherence to the management plan. Things I said in my previous visit that I thought were not important somehow made it into the notes. Things I thought were important were missing. Halfway through the third page, I mentally checked out. It was too much for me to take in.
I could feel him staring at me from behind his big mahogany desk, waiting for me to finish. I quickly flipped through the next few pages pretending like I read them and announced “These look good to me. No changes.” I was too embarrassed to ask for the time I needed to read and understand this information. I certainly did not feel comfortable speaking up and saying, “I don't agree with what you wrote here.” Or “This isn’t exactly what I said.”
Courage: Reading the notes at home
Several hours later when I returned home, I read the notes. So many pages of notes filled with medical jargon. As much as I appreciated the transparency and his desire to have accurate information in my medical records, I did not like how the information was presented to me. I felt rushed to read a long, complicated document.
Each month I pretended to read, understand, and agree with the notes. Finally, during one of my appointments, I got the courage to say “Thank you for sharing the notes. I feel more comfortable reading these at home so I can take my time. During our next appointment, I will share any edits and feedback.”
He said he preferred that I read them while I was in his office, but I stood firm and replied “It can be overwhelming to see your medical information in this way. I really appreciate your flexibility in letting me take my time.” He reluctantly agreed.
Has anyone from your asthma care team shared your medical records with you?
It can be hard, but it is so important to advocate for ourselves. I appreciated having the opportunity to provide feedback on what is written in my medical records, but being forced to do so in the office was way too stressful for me. How does your asthma care team share information with you? How would you prefer to get this information?
Has asthma changed your exercise routine?