My Experience With Telehealth

COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.

| 3 min read
Lydia Sand

This pandemic has created so many unknowns and new realities in fighting cystic fibrosis. Like many others with CF, I've recently had to adapt to telehealth appointments.

A week prior to a follow-up appointment, I received a call from my care team that they would be conducting my appointment virtually to avoid unnecessary risk from COVID-19. Once they confirmed that I was an active member of my hospital's online patient portal and ensured I would have access to a camera and microphone, I was set to meet with the team online. Fortunately for me, I have been using the necessary technology at home as part of my job. Despite being comfortable using online conferencing software, it was my first telehealth appointment and I was a bit apprehensive about what to expect.


On the day of my appointment, I anxiously waited for my team to start the session. Once it started, one of my nurses and favorite physician sat across from me on the screen. It was different seeing them in their office and far from the traditional clinic room, but extremely comforting to know that despite all the uncertainly of COVID-19 I have a care team supporting me.

The appointment was far more conversational than an in-person visit, and we spent much of our time chatting about how I was adjusting to quarantine and things I had been doing to keep busy. As my care team wasn't able to administer a pulmonary function test (PFT) or listen to my lungs, the appointment was structured differently than I'm used to. At first, I felt frustrated as I just completed a round of antibiotics and I wanted a number to confirm that my lungs were doing better. However, having CF is so much more than just focusing on a number a PFT gives you. It's listening to your body and knowing yourself. This concept isn't new to me or others in the CF community -- I can usually tell with subtle changes in my body that I'm fighting an infection and the PFT confirms it. There is the data that a PFT or other tests tell you and there is your knowledge of yourself and your own body.

Conducting appointments via telehealth has helped remind me of the importance of both types of information when consulting with my care team. My care team was relying solely on my ability to articulate how I was feeling.

I've always strived to be a strong advocate for myself, asking questions and being honest if a new care regimen isn't working for me. Thankfully, my care team is excellent at providing patient-centered health care and listens to what I say.

As I look to future appointments, I realize advocating for myself and being open and honest with my care team is more crucial now than ever. Trust your body and what it tells you and be sure to share that information with your care team during both your in-person and telehealth appointments.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Lydia Sand has a drive for life and refuses to let cystic fibrosis hold her back. She received a master's degree in public administration in 2016 and currently works on a grant for health care workforce initiatives in Nebraska. Lydia has been a successful fundraiser for the Cystic Fibrosis Foundation since 2001. She's currently a co-chair for ROSE UP, a past member of the CF Adult Advisory Committee, and involved with other efforts in the CF community. A South Dakota native, Lydia currently resides in Omaha, where she enjoys traveling, playing in a sand volleyball league, trying new recipes, and being entertained by her dog Carl. You can follow Lydia's CF journey on Instagram.

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