Hemoptysis Is a Universal Trigger

Like a blaring alarm, the hot bubble of hemoptysis alerts every ounce of my being to stress. I know I am not alone. Coughing up blood seems to be a common CF trigger for a lot of people. Although 50% of adults with CF deal with periodic hemoptysis, it never seems to become less alarming.¹

Intuitively, we are wired to know that blood has no place inside the lungs. Only breath and oxygen belong there. When your lungs start to bubble, and a thin hot liquid erupts upwards, your natural reaction is to panic, worry, or feel as if you have lost control. Your mind starts racing. Plus, hemoptysis is a red flag that infection is brewing, and with infection comes all the things we hate about CF: coughing, shortness of breath, hospital stays, IVs, and permanent lung damage. From there, it’s a downward spiral.

Hemoptysis in CF

Hemoptysis is one of the scarier complications of CF, and I know that from personal experience. Although it’s more common in adults with more scar tissue and structural changes, it can be very triggering. The bleeding is categorized into three severities²:

• Scant hemoptysis: <5 ml or streaking in the mucus
• Mild to moderate hemoptysis: 5-240 ml or more than streaking but less than a cup
• Massive hemoptysis: >240 ml or more than 1 cup in 24 hours

According to the CF Foundation’s guidelines, patients should contact their clinic with any bleeding. Mild bleeding typically requires treatment with antibiotics, while massive bleeding always requires hospitalization.¹

A bandaid called Trikafta

In the years leading up to Trikafta, blood in my mucus was my “normal”. (Although when I say “normal,” it still scared the sh** out of me, but we will get into that). For a long time, periodic episodes of scant streaking of blood would come and go, followed by larger episodes that popped up every now and again due to infection. It was a triggering episode, as always.

Then in the few months before starting the newest modulator, my mucus permanently turned this revolting rusty rose color–a mixture of green from infection and blood that slowly leaked into my lungs. Frankly, I never saw CF mucus this particular color before, and every time I coughed into a tissue, it sent a surge of surprise and anxiety through me. The color, consistency, and taste pointed to my current lung health: not good. Not good at all.

For a long time, I stopped coughing up blood thanks to Trikafta, and that was a welcome sight (or lack thereof). I knew that meant my lungs were healthier and more stable, but I did have random scant bleeding every now and again. However, over the last year, I have begun coughing up blood more frequently and in larger amounts. As a result, I have had to remind myself how to keep my cool during a hemoptysis episode, as once before.

Ways to cope

Even if coughing up blood is your norm, I know that even the sight of the red, hot liquid can be very panic-inducing for all sorts of people. Having a plan and knowing how to execute it during stress is a helpful way to cope. My personal hemoptysis plan goes as follows:

• Cough into a cup of tissue to measure the blood
• Drink something cold like ice water
• Call my clinic or text my doctor to alert them
• Take slow breaths to keep calm and sit down
• Make a plan for treatment (i.e. usually IV antibiotics)
• Continue to spit out mucus for the next 24 hours to check for blood

Although it's not easy in a high-stress moment like a hemoptysis episode, keeping a rational head and asking for help may be the best ways to cope with this scary but common CF event. You're never alone dealing with this. Spit and keep calm.

Have you experienced hemoptysis? How does a hemoptysis episode make you feel? Share with us below!