Why I keep my own personal health record
Tracking my health gives me a sense of ownership over my care
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Through every up and down of my 19 years living with pulmonary hypertension (PH), one thing I could always rely on was my mom’s little black notebook. Without fail, she would pull it out of her bag at the beginning of every doctor appointment, pen in hand.
The notebook was her hard copy of my health records, one or two pages documenting each routine visit and scary procedure. When I was diagnosed with PH in 1999, I didn’t have a patient portal my mom could log in to. Instead, she kept handwritten notes to track my progressing symptoms, medication changes, and annual test results.
As I got older, I was able to help keep a mental record of my health events. In turn, we kept fewer physical notes, tracking only the basics. My mom and I were both so familiar with every aspect of my healthcare at that point that intense record-keeping felt unnecessary. During this time, my healthcare also shifted from active PH treatment to transplant preparation. Everything felt like it was in limbo.
Once I received my heart-lung transplant in 2018, things expectedly shifted. As I faced countless complications, my parents were inundated with an overwhelming amount of information every single day. My mom did her best to keep a record of that post-operative period, but it was difficult. Things were changing by the hour, often without warning.
After five months, I was moved from my original transplant center in California to the Mayo Clinic in my home state of Minnesota. One month later, I was transported even closer to home and spent two months at the University of Minnesota.
Those eight months at multiple medical centers created a bit of a gap in my health records. Of course, we have a good grasp of the general facts and trends, but so much took place so quickly, most of it within a hospital system that we no longer have contact with.
I’d like to say the past seven years have been uneventful, but I’ve certainly taken more than one hit to my health in that time. This past year, I’ve tried to emulate my mom’s original practices to counteract the chaos. Now, I have my own little black notebook. Of course, I also have a MyChart portal where I can access my health record. But my handwritten remarks comfort me.
I track everything from my major illnesses and setbacks to my weekly labs. I make a note when I take an as-needed medication, and I write a thorough entry after each major doctor visit. Alongside all of this, I keep regular journal entries tracking my mood, exposure to crowds, and overall energy levels.
All this information helps me piece together the ups and downs of how I’m feeling each day. It also provides context that helps me formulate questions to ask at upcoming appointments. Most of all, it has given me back a sense of ownership over my health, rather than relying on my doctors and an electronic database to manage things for me.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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