What I Don't Miss About CF Clinic

Three hours pass and you’re sitting in an exam room watching the clock hands slowly tick away. You’re tired, hungry, and sick of talking about mucus and poop. Someone knocks on the door, greets you, and you watch them put on a yellow gown, gloves, and mask for the 5th time today.

Sound familiar? You guessed it! Welcome to CF clinic.

Stress of CF clinic

Everyone living with CF has experienced a typical marathon clinic appointment that takes the better part of a full day. These clinic appointments are long, busy, and stressful for a lot of people living with CF and their families. Often, you speak with many providers about your health, complete testing, and develop a plan. There’s a lot of unknowns and worries that can arise at a CF appointment that you just can’t plan for. Many times you need to commute a far distance as well adding an additional layer of stress to your day.

Appointments like this can be a lot to handle mentally, physically, and emotionally every three months, monthly, weekly, etc. depending where you are at in your CF journey.

What I don’t miss

When COVID hit, I thought I would miss CF clinic desperately. I couldn’t wrap my head around the fact that we weren’t allowed to receive care in person. Let alone, miss performing a PFT in a clinical setting. I wasn’t sure whether virtual care would be a positive experience for patients or an absolute nightmare. Comprehensive and detailed care seemed so far off but I was willing to give it a try.

I’m not afraid to admit I was so VERY wrong.

I love my clinic and have gone there since my diagnosis 27 years ago. They are like family to me. They have watched me grow up and become who I am today, quite literally. However after using telehealth to manage my care the past two years, I realized I miss my care team more than CF clinic itself. Driving long distances, finding child care, spending hours sitting in an exam room, the loss of wages, etc. those are all excellent reasons NOT to miss receiving care at CF clinic.

I hope clinics around the country will take these factors into consideration moving forward.

Looking to the future for CF care

Now that the technology and infrastructure is in place for telemedicine in many clinics, I think this is the opportunity for hybrid CF care. As more and more CF patients are benefitting from medications like Trikafta, hybrid models of care will be vital to work around careers, family building, and other activities outside CF life. It’s time for CF care to fit into life and not the other way around like it was before.

In addition, we have seen first hand that care can be managed without frequent visits to CF clinics. I know this has been true in my own case. Over the last two years, X-rays, labs, PFTs, even IV antibiotics have been completed all remotely with the same results and progress. Virtual appointments helped me manage my already busy life.

Moving forward, the relationship between in-person and virtual CF clinic will look different for each patient. In a world of possibilities, the important point is that people with CF can continue to have options on how they receive their care.

How do you feel about CF clinic and telemedicine appointments? Do you prefer one or the other? Share your thoughts below!