Coughing up blood is scary and alarming. You could find yourself worried because it is not something that should be happening. In my case, I cough up blood every other month depending on where my health is on the roller coaster ride.
Coughing up blood is called hemoptysis. I have learned over the years from meeting other people with cystic fibrosis that I am not alone in this. I used to be terrified and think the worst, but after meeting so many other people going through the same thing, I found comfort from them. They showed me to be strong and helped me understand from their experiences what to do.
I learned the most important thing from other CF warriors, and it is not to panic. Really look at the blood and go from there. I learned the difference in blood color and the amount as well.
My CF care team is very wonderful because they also took the time to answer all my questions and help me realize when to call them and when not to. Coughing up blood, I realize the difference between a streak in my mucus to coughing up a big ol’ bunch. I always text and e-mail my transplant nurse and doctor and they always respond to me and let me know when to come in to be admitted and be impatient and when to begin oral or IV antibiotics at home.
Identifying an emergency
Usually, when I do cough up blood, it is small streaks in my mucus and the color can range from dark blood to bright red, which can help you understand between old and new blood. My cystic fibrosis care team likes for me to let them know if I cough up about a cup of blood because that is a good amount.
Over the years, I've learned to not call them for small streaks, but I do call or text my team if the blood is consistent throughout the day. Usually, I am put on antibiotics and it goes away but, having CF, it is a problem that never really goes away. Whether months pass, it does happen, but the most important thing is not to panic and just call your doctors.
You're not alone
It was an important thing for me to know I was not alone - because I did feel alone for a long time. I did suffer in silence, thinking the absolute worst. However, I found comfort in the special people I have met with CF that have helped me through a world of questions and worry I had.
Having a wonderful support system is greatly beneficial and I am so glad that I was able to meet others who are going through this. Everybody is different so, please, if you are coughing up blood, always call your cystic fibrosis care team so you can get medical advice and direction about what to do. It is scary but please realize that you are not alone in this.
Do you or your loved one with cystic fibrosis deal with coughing up blood? Share your experience in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?