May 29, 2019 at 1:52 pm #12700Luisa PalazolaKeymaster
The achilles heal of my CF problems has been hemoptysis, or coughing up blood from the lungs. It started when I was fourteen (I’m twenty five now) and was at its peak of frequency throughout high school. Oftentimes, my episodes came without forewarning or signs of exacerbation. In fact, I was usually pretty healthy when I had an episode.
While most people with CF experience some form of hemoptysis, mine were pretty severe. Thankfully a small minority of people with CF experience this. We’re talking cups of blood in one episode.
I’ve had blood transfusions, embolizations to stop the bleeding, and lots of IV antibiotics to treat the underlying infection.
One of my pediatric docs even treated me as though I had ABPA (even though my counts were normal) with IV steriod bursts once a month and fluconazole.
Now, I’ve seen my hemoptysis episodes even out, and haven’t had a bad episode (knock on wood) in years. I think my hormones have a lot to do with my experiences, but I’m wary to say that for sure, because who knows.
I can say for sure that have some sort of PTSD related to my episodes. I avoid laying down flat, and I legitmately panic when I hear a weird crackle in my chest.
Do you deal with hemoptysis?
Have you noticed anything trigger or help it?
How old were you when you had your first episode?
June 23, 2022 at 10:35 am #18489Patti RowlandParticipant
My daughter has noticed an increase in coughing up blood. Fortunately hers have always been small amounts (teaspoon size) and even if she coughs up a few days in a row, she may then go for up to 3 weeks with no Hemopytsis. Still its scary and sometimes embarrassing for her.
She is on Trikafta and since she was in the clinical trial may have been on it longer than most.
She had a consultation to talk about possibly having embolization but some parts of the consultation sounded discouraging to her.
Was getting this procedure done helpful to you? I am glad to hear it has eased up for you, I am hoping it does for her without this procedure having to be done.
June 23, 2022 at 3:12 pm #18490Timothy BransfordParticipant
Luisa. You sound like a younger me because, if not for hemoptysis, I would hardly know I have cystic fibrosis. Do I have PTSD as a result of the many episode of hemoptysis I’ve experienced over the years? Probably, yes.
I do my best to prevent CF from dominating my world. It mostly hovers like a malevolent shadow, a lingering cloud in my sunny sky. Periodically, it steps out of obscurity and slaps me silly — reminding me that it could all change regardless of what I do to control the situation. As a matter of course, I work hard to ignore this steady drumming in my head. Sometimes, I even pretend it does not exist.
To illistrate, this happened 3 years ago.
A Sunday night outing. It was a slightly chilly Seattle evening. I went to the movies with my son Adrian. We saw Black Panther. Very enjoyable movie. Popcorn, soda, and junior mints — just ideal. It felt like everything in life was right. Just enjoying a carefree evening with my son. I felt good. No, I felt on top of the world!
We stepped out onto the sidewalk and into the bustling Seattle night. We walked about ½ block. I took a deep breath of crisp fall air. Immediately, my chest filled with blood. Trying not to vomit blood onto the sidewalk I stumbled to the car. I told my son to drive to the nearest emergency room. I’m bleeding all over the inside of the car. Stark raving terror. Will the bleeding stop this time?
My son, to his credit, does not freak out. He has spent the past 28 years watching me survive these episodes. He just drives to the emergency room and tells me to hold steady.
Maybe you know the rest. Community clinic emergency room – no one really knows how to deal with this. All the blood is unsettling… Feeling a little lightheaded due to the blood loss. Also, experiencing that familiar bizarre sense of euphoria that follows whenever I’ve lost a lot of blood quickly. Soon, the bleeding slows from a flood to a trickle. Just coughing up old blood, remaining as inert as possible, and hoping for stability. 6 hours later, I am transferred to the University of Washington Hospital emergency room. This is the hospital where my Cystic Fibrosis doctors hang out. It is the weekend, so I get the pulmonary physician on call. He knows my primary CF doctor. I tell him the story. I need oral anti-biotics now. I need a PICC line tomorrow. I need IV antibiotics stat! Chest x rays are going to reveal…you get the idea. To his credit, he listens, takes most of my advice, and orders it up.
1 week later, I am at home with a PICC line infusing 2 heavy duty antibiotics. 3 months later, I feel good again. I almost forget about that pesky humming in the background. Except we are now talking about lung transplant–again. The humming gets a little bit louder.
I did not know I had CF until age 34. I am now 66. For the past 30 years, I have charted my lung function to try to predict the future. It was looking grim until Kalydeco came along 14 months ago. My prognosis got a major reset. Now, I am working on a new timeline. Not sure how realistic this is. My wife observes that I could get hit by a Mack truck tomorrow and then this CF angst means nothing. Except, CF is the very real bird in my hand and the Mack truck is, well, a potentiality not a probability.
This is my experience with CF. Me and my shadow Mr. Hemoptysis. In between these moments of stark raving terror, I feel almost normal. Almost.
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