These days are beyond trying; they are tiring and rather tedious. If you feel like you are wondering "... where is the light at the end of this tunnel?" you are not alone. We all would like the answer to that question. I was able to witness a glimmer of light when I went to see my cystic fibrosis care team a few weeks ago.
Who knew, during a pandemic, that seeing my CF doctor would provide me an overall sense of relief?
I last saw my CF doctor and team in early March, right before COVID-19 cases started to spread like wildfire. Back then, we talked about "extra" precautions to take, common sense things really, and to avoid being around anyone who is or may be sick. Living with CF, I've been more prepared for handling this situation. For that, I am honestly grateful.
At my first visit since the shutdown, things were a bit different. Upon entering the clinic, there were markers on the floor in the entry between the sliding doors that read "six feet apart," indicating where patients needed to stand if others were ahead of or behind them. A desk with masks and hand sanitizer was also in the entry. After entering, I was screened by a nurse. She took my temperature and asked me a series of COVID-19-related questions to determine if I could proceed into the clinic.
My clinic had added a barrier of plexiglass at each check-in window. All check-in procedures were handled as smoothly and safely as possible. I was alone in the waiting room -- there wasn't a single soul near me, a welcome sight. Shortly after I sat down, the nurse called me, which was the shortest wait time I think I've ever experienced.
Once the nurse directed me back, the visit went like usual. My height and weight were measured (I've gained a few more pounds -- thank you, Trikafta®, for this reserve!) and then I was placed in an exam room where my vitals were checked. My CF doc came in immediately. We discussed how I was feeling, how my breathing was since I started taking Trikafta, and any concerns I had. I also met with the dietician to talk about all things CF-related diabetes. Next, I met with the social worker regarding any possible insurance questions. One of the respiratory therapists came to get me for a pulmonary function test (PFT). I hadn't had one since March and I had never gone that long between doing them. Then, I went back to my room. The CF clinic pharmacist met with me to discuss all my meds and the pharmacies I deal with. My CF doc returned to my room to go over my PFT result and he addressed some other issues and questions I had.
I was intensely curious if any new COVID-19 information was out there, especially for CF patients and their families. My doctor didn't have much in the way of a COVID-19 update, as information is constantly changing. He expressed how the CF Foundation is keeping everyone as best informed as possible, which is immensely helpful. He shared his belief that things will get worse during the fall; therefore, he has been trying to see all of his adult CF patients in person, now, before getting to that possible point.
I felt his best advice was reiterating what I already knew. Wear a mask. Avoid large gatherings and public places where many people may be. Stay at least six feet apart from others, if I must go out. Only visit places that are absolutely necessary. Wash my hands. Be smart and remain careful. He also pointed out that COVID-19 cases in CF patients (per data given) had proven to be more optimistic than originally feared. This doesn't mean that COVID-19 isn't scary, or to not take it seriously. It was a glimpse of good news I needed to hear. If you are feeling nervous about returning to your CF clinic for an appointment, I encourage you to try and remain calm.
Keep in mind, care teams are screening every single person who walks into clinic and are taking every precaution they can to ensure everyone's safety, even people who may be sick but have no symptoms. Express any concerns you may have -- ahead of time -- with your care team to help ease any anxieties you may feel before your visit.
It was great to see my team. They are like my second family and I missed them. I was also thankful to have a PFT done in clinic. Most of all, just seeing my care team and being able to talk face-to-face again was refreshing. I feel the entire CF community is so fortunate to have some of the most wonderful care team members caring for us. These days are tough on the care team members, as well. Believe it or not, they miss seeing us. If you do go in for a CF clinic soon, be sure to thank your care team for all that they do.
Interested in sharing your story? The CF Community Blog wants to hear from you.