The fear of hemoptysis

I can’t say that I’d choose hemoptysis over the fear of it – coughing up blood rocks my world and I hate it.  The fear of hemoptysis, however, is starting to impact my life.  The last two times I sprung a leak were related to walking up a hill and stairs.  In fact, the latter happened walking to clinic, which allowed me to pass “GO” and move directly to “x-ray” on the CF Clinic Monopoly board.

Both recent episodes have come as a surprise, as always, but during events that in the past didn’t cause bleeding.

Now I adjust my activities due to a fear of bleeding.  I haven’t done cardio for months; I avoid stairs or walk up them slowly. Disneyland last week caused me great fits of stress when I walked up hills (not as flat I remember when I didn’t worry about drenching Mickey with blood, which would ruin a few photos but end up a hit on Youtube.com).  The thought of bleeding in the Magic Kingdom and disrupting my family trip was a heavy weight to carry around.

I know I’m lucky and have no reason to complain, but isn’t it human to always want more? Or at least to want to be normal and not worry about coughing up blood  in public places?

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9 thoughts on “The fear of hemoptysis

  1. I’ve been lucky to not have it happen full-blown, unstoppable in public yet. I did have it happen in a friend’s hotel bathroom on his wedding weekend and in an airport bathroom, though.

    95% of my episodes occur after getting in bed. I can feel the gurgle and know I have to get up to go to the office or the guest bathroom for Kleenex or toilet paper. Don’t you just love your tongue in the morning?!

    • I hope it never happens to you again. I wish I had the power to do that. I really hate it and have had it happen in some crazy places, one of which I will write about one day. Thanks for reading and commenting. BTW, regarding your bed comment, I think it has to do with the pressure of lying down. That’s why I haven’t slept flat for five or six years.

      • Weird. My recent episode was right after lying down in bed. Going to have to ponder your hypothesis…

      • I remember my doctor telling me this is quite common due to the pressure of the blood vessels(?) in the lungs. When I have a bad bleed, I can’t lean over because pop goes the weasel and I break the clot right away.

      • I do enjoy sleeping sideways in an inclined hospital bed, but it’s so much darn effort to roll over in those things. 😉

        My pattern is usually reserved to the second week of IVs when the gunk clears and leaves the festering wounds unimpeded OR during very stressful times and I can tell my pulse and pressure are up from baseline.

        Do you have a special bed or do you use a foam slope?

      • I slept on the couch for a few years, then moved back to bed with pillows. Now, after a few recent bleeds, I’m back to the couch. When I find the perfect position on the couch, it’s heaven. Just pure heaven, though my labrador sometimes fights me for space. Not the worst thing in the world.

    • Graysmoke,

      Thank you for visiting and writing. I will check out your blog. It’s nice to have someone from outside the cf world commenting here. I wasn’t really aware others had this challenge of hemoptysis chronically.

      Best regards.

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