Living with cystic fibrosis, I have experienced a lot of CF medical milestones. I have had a lot of “firsts” in my 40 years of living with CF -- first tune-up, first intestinal blockage, first antibiotic resistance, first sinus surgery, and fortunately, first modulator, among many more. But it isn't often that I have gotten to experience some of the normal medical milestones that my friends have reached.
Because I now have my COVID-19 vaccine, I can get back to some of my regularly scheduled medical appointments. One of the first on the to-do list was my yearly Pap smear, which I had to cancel last year on March 15, 2020, just after COVID-19 was declared a pandemic. Although I have never had issues with my reproductive system, keeping these regular appointments is important for preventive health.
It can often feel like a lot of work to do these normal appointments on top of CF life, but they are a must. My CF bestie Carly died this year of cervical cancer, which developed years after having a double-lung transplant. So quickly can our little cells turn abnormal. Never knowing what the future can hold for us, it's helpful to keep tabs on as much as we can. I'll add that the same goes for yearly skin cancer screenings and dental appointments -- they are a must for preventive health as well.
Sitting in the room for my Pap smear, with my undies folded neatly under my other clothes -- as we ladies do -- I saw a prescription on the desk for a mammogram with my name on it. I was so excited and filled with joy that I had made it to 40 and get to experience the “squish” and “squash” with the rest of my friends. My gynecologist was definitely amused at my excitement.
Although it may seem small, these normal medical milestones are something to celebrate. They are a mark of survivorship and another part of life to be relished in memory of all those CF friends we have lost.
I get the same feeling of gratitude every time I fill out a survey and my age bracket is further and further down the list, or when I have to do a deep scroll to get to my birthday in 1981. Or recently when I had to buy a new car -- my fourth car. I was amazed I got to live to a fourth car!
As modulators allow many of us to live more normal medical lives, these normal medical milestones will probably not seem as exciting to those whom I like to call the “Kalydeco Kids,” who started on modulators as children and who will experience a vastly different disease. I do hope that they will keep in perspective how fortunate they are and remember their elders who came and were lost before them -- those elders whose parents and families spent decades fundraising and advocating to make their tomorrows better.
Although I will allow these Kalydeco Kids the luxury to take it for granted, I hope they remember that many of their CF elders never reached the milestones they will reach and that there are fellow people with CF who are in the 10% -- who aren't eligible for modulators -- who still need medical innovation on their behalf. I hope these Kalydeco Kids will keep up the fight #untilitsdone for all people with CF.
Interested in sharing your story? The CF Community Blog wants to hear from you.