Let's face it: living with cystic fibrosis is never easy, and living with CF in the middle of a pandemic is harder still. As an adult with CF, a grateful recipient of two double-lung transplants, and a recent survivor of cancer to boot, the past 11 months have been a whirlwind of emotions for me, as I'm sure is also the case for others in our community. I have been worried about the effects of COVID-19 on people with CF and on our wonderful care teams and hospital workers, amazed at the innovation in fields like telehealth that have allowed us to continue to receive the specialized care we need, and impressed by the incredible resilience and strength of our community.
I have also been, at times, extremely frustrated about the unique challenges faced by people with CF and other serious medical conditions in the COVID world. And with the recent (and so encouraging!) authorization of highly effective vaccines against the virus, I feel the conflict between frustration and hope perhaps more than ever. There's a light at the end of the tunnel at last, and yet the tunnel, from where I stand, still feels way too long. I worry about my ability to stay safe while I wait for “my shot” at protection from COVID-19.
This issue is a tough one to address in a single blog, because COVID-19 vaccination protocols look different depending on where you live. In my home state of Colorado, for example, people younger than 65 with one serious preexisting condition that significantly increases the risk of severe complications from the virus are all placed together in Phase 2 of the vaccine prioritization plan. Unfortunately, this phase doesn't include people living with CF. There are currently five groups of people ahead of people with CF, ranging from frontline health care workers and the elderly, to people who work in industries considered essential or who have contact with the general public.
The number of people who need to be vaccinated, and the decisions about who gets priority mean we don't know when we are likely to receive the vaccine that may help save our lives.
I don't want to minimize the fact that this is a hard issue with no easy answers. Vaccine demand in many parts of the country simply exceeds the supply, which means prioritization plans need to be in place to ensure that those most vulnerable to severe outcomes from COVID-19 infection get access. That makes sense to me, and I have huge respect for the policymakers struggling to make this process as fair as possible. That said, I can't help but feel a little left out and, quite frankly, worried. My multiple diagnoses include chronic immunosuppression from my lung transplants and cancer, in addition to ongoing challenges due to CF.
Like most of us, I have been as vigilant as possible ever since the COVID-19 crisis began because I knew it was up to me to protect my health and my lungs in any way I could. I'm lucky to have a supportive network of family and friends who have helped me combat isolation and make it to this point with my sanity (mostly) intact. But my need for in-person medical care is getting more and more urgent; my lungs need imaging and my oncologist wants to do additional scans as well. I can no longer rely exclusively on telehealth, and that means that the chances are higher that I will be exposed to this virus -- not because I'm going to parties, but because I have to be in large, public settings to access care.
My hospital and care teams are doing all they can to keep me safe, and I'm grateful. However, my suppressed immune system means I'm at higher risk than most for severe disease.
I wish more people understood that for people like me and many others with CF, this vaccine doesn't represent a “return to normal” so much as a chance to access crucial medical care without that added layer of worry and concern.
Even though I can't necessarily get a vaccine tomorrow, there are still things I can do to feel empowered about my health and to make my frustrations heard. And so, I have challenged myself to continue speaking up about this subject, so that more people understand. I've been reminding myself that it's okay to be frustrated. Being vocal about why people like me should have access as part of a high-priority group doesn't make me selfish or uncaring. I've been as honest as I can with others about the challenges of living through this pandemic with CF and other medical conditions.
I've stopped accepting comments like, “you've come this far so these last couple months should be easy” and started to give myself space to admit that this is hard -- really hard.
I've also reached out to my doctors to discuss my concerns about things like in-person visits, and we've been able to make a plan together that will keep me as safe as possible given the situation.
If 39 years (and counting!) with CF has taught me anything, it's that I can't go this alone. By speaking out about my personal experiences and needs -- including the hard stuff -- I am finding the support I need, and, I hope, helping to grow public awareness of why this vaccine matters so much to our community.