The Difficulty With CF Clinic Numbers
Even though I have gone to roughly 140 or more cystic fibrosis clinics in my life so far, I still feel anxious before each one. If I’m sick then I’m worried that my lung function numbers will drop and I will need IVs (which I’m running out of options due to antibiotic resistance). If I’m feeling healthy, I still worry that my numbers won’t reflect my current health. My doctor tries to remind me not to let the numbers affect me so much, but I just can’t help it.
Feeling the weight of clinic numbers
There have been months where I feel healthy and have worked so hard by adding in exercise and doing everything I could, but my numbers still stay the same or may even drop off a tiny bit. Those clinic days are so deflating. When you have your lung function and weight regularly checked and recorded every 3 to 4 months your entire life, you get used to feeling the importance and weight of those numbers.
I know as long as I feel healthy that the rest shouldn’t matter. But it’s so easy to hear other friends’ numbers and start comparing theirs to mine. I compare my numbers with people who have similar struggles and issues as I do (without even meaning to). For example: I have had a lot of gastrointestinal issues, blockages, minor liver issues, major vitamin deficiencies, and CF-related arthritis. So if someone with a similar cystic fibrosis background talks about their clinic numbers, I can’t help to think about my own.
Sharing numbers with other CFers
Comparing numbers isn’t about trying to brag and it isn’t meant to make yourself or others feel worse. A lot of times people share their numbers for many reasons, personally, I share mine on social media so my loved ones can know how I’m doing. It’s easy way to keep updated with family and friends. Sometimes we share just because we’re excited about a triumph or positive aspect. We share when we’re really struggling and we need support. Also, I have shared before so I could be held accountable for my actions (usually when I want to stick to an exercise routine).
It’s nice to share my numbers, whether lung function, weight, or labs, with other cystic fibrosis patients who understand the struggles, obstacles, and triumphs. If I see friend’s numbers after their clinic, I’m just happy to know how my friends with CF are doing health-wise. I love seeing the updates. I worry about other friends with CF because I have seen too many of my friends struggle or pass away too young. My CF support system is almost entirely online (due to cross-infection issues), so sharing my health online is the best way to stay connected.
Supporting each other
If my friends have a good clinic then I get to feel excited for them. I congratulate them (as they would me). Just like when they are struggling and I can send extra love for support. I try to never take other’s numbers and compare them to my own, however, it’s something that’s hard to not do. There are times where I see friends’ numbers and I think "gosh, I wish those were my numbers." But then I remind myself I’m lucky that I’m stable and pretty healthy considering my history. And I think about all my friends that are struggling more and more, or have passed.
On the other side, if my numbers are way better than a friend’s I tend to feel guilt. Why has this medication raised my lung function by 10% and yet some friends are still struggling or not responding the way I am. Jealousy or guilt: either way it’s not great. So, while seeing others' numbers can be hard sometimes, but I still think it’s important to share.
I like to be open, learn, educate, and cheer each other on. At the end of the day, I have to remember that the numbers, while important as a guiding factor, are not the sole factor that determines my health. Those numbers are important but I need to remember everything else that comes into play in the balance.
Do you or your loved one with cystic fibrosis feel anxiety about clinic numbers? Share your experience with us.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?