One could say growing up with cystic fibrosis prepares you for what life would be like during a deadly pandemic. For your average person, this new “normal” is very different from your average day. But for someone like me, a 42-year-old mother and wife living with CF who has undergone two double-lung transplants, the notion of physical distancing, washing your hands, having hand sanitizer on you at all times, and wearing a mask in certain situations was nothing new. Fortunately -- for me and my family -- this new normal was status quo.
With that said, navigating through this pandemic has been nerve-wracking, especially when it comes to maintaining my health. Going to doctors' appointments and hospital stays weren't what they used to be. The new procedures and protocols put in place at each hospital were necessary but not easy at times. For me, that meant neither my husband nor my 12-year-old twins could accompany me.
CF check-ups were ok. Typically it was a quick in-and-out visit, but when it came to procedures like bronchoscopies and surgeries, it got overwhelming. I consider myself pretty good at navigating hospital visits and stays, but when a loved one can't be with you, it can be stressful. The stress was even more so when I was hospitalized for a week last fall.
I often asked myself, “Could the appointment or minor procedure wait for another few months?” In the end, I had faith that each center I visited had the proper policies in place to keep their patients safe. I also continued to rely on my own doctor's advice.
There were times when virtual appointments were available but -- being a CF and a transplant patient -- many things, such as bloodwork and X-rays, couldn't be done in the comfort of my own home. Given my health history, I didn't want to risk waiting until the pandemic ended.
I knew I needed to continue to be diligent in managing all aspects of my health during the pandemic, including CF-related diabetes. I knew that when we got to the other side of this pandemic I needed to make sure I was healthy.
Therefore, I continued seeing my doctors -- not so much in the beginning when things were shut down, but certainly when things started opening back up. During the early fall, I had at least two doctors' appointments each week. It was a lot but I had many aspects of my health to manage, especially as I continue to get older and taking immunosuppression medications.
CF never defined me but my health was always my first priority. This mindset was more true when I got married and became a mom. How can I take care of my family if I don't take care of myself and stay healthy?
This year has been tough on so many people. But, when you are considered high-risk, the odds are already stacked against you. I couldn't afford to get COVID-19. I am living with a 60% lung function and have already been hooked up to ECMO (extra-corporeal membrane oxygenation), a vent, and have been intubated. You name it and it has happened to me. I will not risk taking any chances of getting this deadly virus because I don't think I would come out the other side.
I've already lived through two transplants and stared down death's door. This pandemic wasn't the time to take any chances. It has been a time to play it safe. I knew I had an obligation to myself and my family to take care of my health and stay on top of things. I also couldn't risk putting off any doctors' appointments because my life literally depends on them.
In fact, if I had put off going to see an endocrinologist, I would not have been diagnosed with CF-related diabetes and who knows how I would be feeling now? I also wouldn't have been able to begin taking Trikafta® if I stopped getting my weekly bloodwork done.
For me, all of these aspects are pieces of a puzzle that come together to ultimately keep me healthy so I can live each day to the fullest. If that means continuing to go my medical providers in-person during a pandemic I will.
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