Taking charge of doctor visits helps ease chronic care load

When I was recently discharged from the hospital following a stint with COVID-19 and norovirus, my team automatically scheduled me for an in-person follow-up. As the date in July approached, I double-checked the appointments in my online portal and noted a few things.

First, I had been scheduled for a spirometry test by default, even though I cannot complete this test due to my tracheostomy. Second, I had been scheduled for an X-ray. While I could see some small value in this test, it didn’t seem necessary since I was feeling well. Additionally, I knew I would have an annual checkup in October, when this test would be administered. With this knowledge, opting out of the X-ray to avoid the excess radiation exposure seemed like the optimal path.

This meant there was only lab work and a visit with a physician left on the agenda. I complete lab work weekly, so this could also be taken off the list. Ultimately, I requested that the meeting be converted to a virtual visit. Fortunately, my team agreed with all of these decisions, and the changes to the visit were made. Through this process, I was able to avoid unnecessary testing. I also didn’t have to be physically present in the clinic, which is exhausting and can also come with the risk of exposure to communicable illnesses.

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Tapering the demands of this follow-up is just a small sliver of the advocacy I engage in as a patient living with chronic illness. This habit extends way back to my childhood living with pulmonary hypertension. Growing up, my parents and I learned early on that the rhythms of routine disease monitoring would often dominate my life.

This meant catheterizations, standardized testing, and meeting with my doctor on a yearly basis. My family traveled all the way from Minnesota to New York for these appointments. Over time, it was an easy decision to stretch the time between these visits as much as possible.

Of course, if there was a new symptom or something urgent I needed to be seen for, we never delayed care. But when it came to annual checkups, pushing things out even a couple of months could go a long way in reducing the space that my health maintenance took up in our lives. It also reduced the frequency of riskier testing, like heart catheterizations, which required anesthesia.

Now, as a heart-lung transplant recipient and someone who has been living with rare and complex health issues for over 25 years, I am hyper-aware that doctor visits and testing will never disappear from my calendar. Instead, they pose a cumulative presence in my life. There will always be more waiting.

Any time I’m able to reasonably cancel a test, make an appointment virtual, or extend the interval between visits, I will not hesitate to take advantage. It’s important to remember that as a patient, I have agency over the appointments to which I consent. More importantly, I am equipped with a lifetime of knowledge to make those choices in an informed manner.

Especially knowing that an unforeseen hospitalization or a change in my condition could be just around the corner, embracing the days that I can be as distanced from my health concerns as possible is one of the many little ways I keep moving forward.

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.