A Doctor’s Departure Reminds Me of the Importance of Self-advocacy

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by Mike Naple |

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Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH).

This caught me a bit off guard. I had gotten to know this particular doctor over the last 20 months or so, and felt like we had developed a good rapport. I felt comfortable asking questions, even if they seemed out of left field.

I started seeing this doctor during the COVID-19 pandemic. At the time, my regular lung specialist had been assigned to manage COVID-19 patients exclusively. This doctor also saw me when I was unexpectedly hospitalized because of a post-Thanksgiving fluid retention flare-up.

Living with PH, I’ve had to become more comfortable navigating change and the unanticipated or the unplanned. Symptoms like breathlessness, fatigue, and dizziness can emerge like monsters from under the bed with zero notice. I’d like to say that I’m comfortable with change, but life post-diagnosis has heightened my anxiety and forced me to figure out the most constructive ways to react to change.

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When you have a chronic illness or rare disease, relationships with your doctor and care team can become some of the most meaningful and regular ones you have. Given that PH is rare, it can be hard to find doctors who understand the disease, let alone assurances that you will be comfortable with the care team available to you. And PH care might not be readily accessible in your community. I’ve talked with patients who drive hours to their appointments, sometimes traveling out of state, in order to connect with a lung specialist or cardiologist familiar with PH.

I am grateful because I continue to receive care at the hospital where I was diagnosed in 2016. I feel like that alone is a rare privilege, as the consistency and familiarity comfort me during appointments. I know not everyone in the PH patient community has the same level of comfort or consistency when it comes to their care team.

The Pulmonary Hypertension Association’s PH Care Centers initiative recognizes healthcare systems that have accredited clinical programs and comprehensive care, enabling them to properly diagnose PH and treat the complex medical profile of patients with the disease. This is a great resource for patients looking for the closest health center with expertise in PH.

Still, the idea of switching care teams makes me uncomfortable. I can’t help but think about care I received from prior health providers that contributed to a delayed PH diagnosis. When my partner and I considered moving out of Washington, D.C., I vocalized that having a reliable care team for PH would be a major factor in choosing a new location. We listed PHA’s care centers as a plus for several cities we were considering.

A week after hearing about the change in my care team, I received an email from my outgoing doctor. It reminded me of the many different people who make up my care team, particularly the respiratory nurses who administer the spirometry and six-minute walk tests, and the on-call team members I might need after hours.

It also made me realize that as much as I might fear or be uncomfortable with change, the one constant in my care team is me. As patients, we are the anchor of our care team. We’re more familiar with our own medical history and conditions than we often give ourselves credit for — after all, we live with PH on a daily basis. We’re like the constant coefficient in the equation solving for how to manage chronic illness.

While Pulmonary Hypertension Awareness Month is an excellent opportunity to raise awareness and advocate on behalf of the community by sharing stories with members of Congress, it also serves as a reminder of how important it is for those of us living with PH to advocate for ourselves in the exam room.

I have strived to be the best advocate and most active member of my care team — to transfer many of the advocacy tools I’ve acquired working on behalf of elected officials to my personal healthcare. Whether or not you’re experiencing a transition in your care team, I encourage you to speak out and find ways to be your own advocate in your PH journey.

Follow Mike on Twitter: @mnaple.

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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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