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If any friends or family members don’t want to think about me bleeding from my lungs or what my cough is like from my perspective, come back for my next post… this one might be disturbing to you, but if you can stand it, it will give you a lot of insight into my past and present.
Still here? Good!
Hemoptysis is one of the words CFers hate. I’d rather be called a cuss word than a “hemoptysizer.” /shudder! It’s when your lung springs a vascular leak either due to an infection or when gunk that was previously in one spot eating away at your lining gets removed either from exercise or medication. It’s an indication of one of three things that I’m aware of as a non-pulmonologist with 12 years of medical training:
- that something got dislodged over an infected site and you’re on the mend
- that you have an infection that needs to be hit with meds
- that you have an underlying pulmonary/vascular weak spot that needs to be plugged
My history of hemoptysis
Growing up, I always heard the doctors ask my parents at clinic if I had any streaky sputum (loogies, to the layperson) or what color my sputum was, but they only got to ask one of them because the answer was always, “I don’t know, he swallows it.” Gross, I know, but I hadn’t learned to transfer from the back of my throat to spitting yet… or else my gunk wasn’t prevalent enough to get to the point of being so gross I didn’t want to swallow.
When we moved to Florida at 16, I was being more normal for an adult and could answer those because I was spitting by then. The answers were always “no” and “manilla folder yellow.” I remember the first time I coughed blood ever and the first time it freaked me out, though it’s strange that they were separate incidents.
My first time was in the back seat of the car (woah, what story am I telling here?) after a day at an amusement park. I think it was a long, hot day at Sea World that got me all worked up, dehydrated, and worn out. I plopped over on my side to read and fall asleep, and I did my usual cough from the change in position. Something tasted different, though. For whatever the reason, that’s the end of the story, but I connected the dots years later.
The next time anything happened was when I was 21. I was living on my own (and thus not being a good boy with my treatments) and had just clocked out of work near downtown. I coughed and my steering wheel and windshield got splattered with little, tiny specks of red liquid. “What the…?! Is that what I think it is?” was my very normal reaction to that sequence of two events. Cough -> red liquid splattering. Hmmmm.
Cough again. Uh, oh! I was starting to make a mess of my car. I could also feel a gurgling, bubbling in my lobes. What was going on? I pulled over onto the berm of a deserted street in the shipping yard area of town, so I thankfully was safe and had privacy as I opened the door and swung my legs out of the car to put my head between my knees to avoid any more mess on my or in my car. There I sat for one of the longest 10 minutes of my life that has only been exceeded by a couple of medical tests and and one other bleeding incident. I was coughing constantly and couldn’t stop. By the time I was done there was a pile of semi-gelatinous red goop that would normally indicate that a small animal had been butchered there. The next day, I was on IVs for two weeks.
I’ve only ever had one worse incident than that where I was in my bathroom (same year) and thought I was going to die because I couldn’t stop coughing long enough to call 911. I’d have to call and let them figure it out from the constant coughing and yelling “help” into the phone.
The next decade
That was when I was 21. Now I’ll be 32 next month. I thought back then that bleeding was the end, so I’m quite glad I was wrong about that perception. From that last incident in the bathroom on, almost all of my subsequent bleeders have been at night, just as I lay down to sleep. I get a gurgling sensation (or even sound) in one of my lobes as I exhale. If a cough follows, I immediately get up and run to the office or guest bathroom as quickly and quietly as I can to cough into Kleenex since you never know if the first cough will be messy. Even this normal part of life has stopped since becoming compliant with my meds, vitamins, and gaining the weight I needed so desperately.
Until now. Since starting to run, I’ve experienced hemoptysis twice. The first time, I was mad, but not utterly concerned because of how quickly it stopped. It was literally 2-3 coughs and it was done, though I cut it on home walking after that to be safe. The second time, this week’s Tuesday run, it happened again, but this time it didn’t let up. I coughed and spit out red gold for at least 5 minutes; a much stronger episode because I got some on me that time. I was not only mad but also worried that the doctors would make me stop running and training for the 5K – they had to know about this time, and not by reading it on my site.
They debated between the two of them and Sue if it was something to be taken care of or if it would get better, which came down to whether it happened because it was an exacerbation or if it was because I was finally making my body pull its weight and had dislodged years of junk. The decision came down to leave it alone but tell them if it happens a couple more times while exercising so they can/will take care of it since exercise is so important. They can’t have me not exercising to stop from bleeding or I may develop issues worse than that, which may be untreatable.
Treatment
Treatment for hemoptysis: more vitamin K or a procedure called Bronchial Artery Embolization (BAE). They go into your arterial system via the femoral artery and thread a catheter into the lungs and release one of an assortment of embolic agents that stop the flow of blood to the offending artery in the lungs. Typically, an embolism is a bad thing, but in this case it is the goal of the procedure. From what I’ve read, if they do decide to do this, it would be earlier than normally done since I do not qualify as having major hemoptysis, but to cut off the recurrence that allows for normal activity would be a medically beneficial procedure. Since it’s not guaranteed to work or last, I’m hoping it stops on its own and that my lungs just start to cooperate with what I’m trying to do here… but if they don’t, POW! right in the kisser!
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.
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