31 Days of CF: My Health Is More Than Charts and Numbers

Photo courtesy of Lauren D’Amato

Day 3 of 31

This is Lauren D’Amato’s story:

Why must doctors feel more confident looking at charts and numbers instead of listening to their patients’ concerns? Despite what my medical charts may say, I have some stories that prove otherwise.

For whatever reason, my lung function tends to go up — at least on the charts — when I’m sick, and go down when I feel perfectly fine. In July 2019, I caught the flu and, to start antibiotics, I had to get a PFT (pulmonary function test). At the beginning of my stay, my lung function rose to the highest it had been in 10 years. The doctors, however, believed it was not a lung problem but something else.

I was adamant about starting antibiotics since I didn’t want my lungs to get worse. As I started getting better though, my lung function went down; the doctors were concerned that my lungs were actually worsening. In reality, my lungs felt better compared with when I was first admitted. Sometimes, I wish doctors didn’t rely just on numbers and instead considered their patients’ understanding of their own bodies. Numbers and charts have lied to me before.

For six months in 2008, I felt pain in my lower right abdominal region, and every test kept coming back normal. The pain would come and go, and I knew that the problem was my appendix.

That November, GI (gastroenterology) surgeons went in for a hernia on my left side — couldn’t find anything — so they performed exploratory surgery and found that my appendix was 1/3 the size it should’ve been. It had been leaking fluid for the prior six months (which caused the pain), though it didn’t completely burst like it would with normal appendicitis. The doctor who performed the surgery said that this phenomenon only happened three times during his career — and only with CF patients. Just my luck, huh?

My advice: Be confident with your personal history. Only you can truly feel what’s happening in your body. Just because the tests look “normal” doesn’t mean you’re not still suffering. Always continue to speak up for yourself.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.