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

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

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2 comments

  1. Margaret says:

    Thank you for sharing your experience. Good for you for persevering and trusting that you know your body best! Not easy to fight for yourself especially when you have CF and are burden with so much more than other people. Stay strong and healthy!!!

  2. Edward G says:

    This a revealing and accurate description of how many doctors treat some patients. I’m not aware of many doctors who have CF themselves, and treat CF patients.
    This is part of a disconnect. When you consider that many physicians have common diseases such as heart conditions, hypertension, diabetes, nicotine use, alcoholism, depression and anxiety. It’s probably easier for people to treat and diagnose symptoms and conditions that they may have personal experience with. The level of empathy should be higher when common experience is shared.
    It may an interesting question for a CF patient to ask their doctors, “would you want to have Cystic Fibrosis or the condition/s that you may be dealing with?” I’m pretty sure CF patients already know the answer they would hear.
    Since most CF patients are diagnosed early in life everyone around them is older an more experienced. At some point CF patients must be given respect if they are compliant on treatment protocols, careful in describing conditions and changes in their bodies. A doctor must be confident and informed when treating their patients. It doesn’t mean. They shoul be dogmatic and overbearing when a patient wants to know “why” a treatment path is being pursued. CF patients learn about many things early on, discomfort, pain, embarrassment, exclusion, isolation, needles, ivs, nebulizing medications, persistent coughing, infections, poor lung and pancreatic function, fatigue, and serious health diagnosis that promise shorten life expectancy. Along with this is multiple ans sometimes lengthy hospitalizations. All of these take a toll on the body, mind and spirit. One thing is for sure, patients like this learn fast enough what feels better or worse.
    All patients wish for a cure and doctors and nurses that provide dignified and caring treatment. CF patients are no different.

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