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Hemoptysis: Bleeding Lungs

BloodIf 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!

Comments

  1. Sounds like you have a great medical team there. I would suspect that in the old days they might have just told you to take it easy till it stops bleeding. These guys are aggressive! It makes sense to me that the new exercise regimen is loosening ancient gunk. But, like you, I don’t have a medical degree.

    • Yup. I see you read it despite the disclaimer. 😉

      I was discouraged by an article from 1995, but those were major hemoptysis (240mL/24hours) and were likely end-stage CFers, but they still concluded it was safe and effective, but not nearly as effective as this paper I linked. I’m not going to be too upset if I bleed again.

  2. Jesse
    Have you ever noticed bleeding with certain antibiotics?? I have been on zyvox oral and IV everytime i get really bad bleeds first it was blood noses that i had to have cauterized 2 times with in a few weeks of eachother. The last time i was on IV and had a really bad lung bleed were i was wondering if i should try to tell my husband to call 911 or wait it out a little longer……very scary! Not sure if the antibiotic cleans me out to much or if it causes low platelet count? My doc doesn’t want to believe that it has anything to do with the meds, but i beg to differ. ha

    • Not particular IVs, but all b/c it frees up gunk. I usually bleed on IVs, but not my Oct. IVs b/c they were targeting my sinus bugs only, so my lungs were unaffected.

  3. Ken Ballou says:

    Hi Jesse, I have to say coughing up blood and i mean lots of blood was the scariest thing that i would go through. i first coughed up blood when i was 13years old, it seemed like i almost filled a bathroom sink. i was so scared and afraid to tell anyone because i thougt that i was going to die. when i was 17 it happend to me when i was lifting weights. in college i splattered a drafting in class. i even was coughing up blood during my marraige. when i coughed up blood i would do it for days…i would not be able to use the vest or post drainage until the bleeding stopped. sometimes vit k shot in addition to the pill form. because of coughing up blood i would fear every time i had a pft…there would be nights that i would lay awake and just listen to the gurgling…very scary stuff. thanks for sharing. my thoughts are with you my friend/fibro.

    • I’d say it’s the one thing that makes you feel the most alone growing up because “no one” else is going through that. I agree with the feeling of being too scared to tell anyone. I didn’t tell Beautiful it even happens until 2-3 years into dating, and she usually only knows it happens if she asks if I’m okay after a REALLY bad coughing and I shake my head negatively. Here’s to a world without gurgles…

  4. aunt Sandi says:

    I vote for lungs behaving themselves.

  5. Queenbillabong says:

    Oh God, the gurgles. The weird vibrating in your chest…the freeze-like-a-squirrel-seen-by-a-dog position when you taste it.
    That’s something I don’t miss at all.

    Dude, you are basically me. I have the same mutation and everything! I’ll be 30 in July…one twist. I’ve already had my spare parts put in. Yeah, couldn’t hold it off any longer. The batteries had to be changed.

    If you want to get to know me better, you can read some of my blog stories. I’m sure you can relate! Here’s the story of my own first experience. http://chris-stathers.livejournal.com/7013.html

    And the whole bowel blockage as a birthday present thing? Been there.
    http://chris-stathers.livejournal.com/10843.html

    Be well, Awesomeness Man!

    Cheers,
    Chris

  6. One of these days… Lungs will be always perfect for everybody!!!

  7. Breckgamel says:

    That is rough, Jesse. Thanks for the update – and the real-life story. Yikes!

  8. Erin Taylor says:

    Had the EXACT same thing! Seriously, this literally sounds like the story of my life…although I’ve had bleeders a few more times then that. I had one bleeder that I seriously thought was the end. (my first real big one…I consider it my official first, altho im pretty sure id coughed up blood a few small times before). I even “crashed” (last thing I remember hearing before I passed out …”She’s crashing…” all I was thinking? “Shit this sucks!” then… nothing…) Woke up the next day to find out I had been entubated, and a BAE had been preformed. ICU for 3 days. That was about 4 years ago. Had another BAE this past year, but the bleed wasn’t nearly has BAD, just had more smaller ones. I usually get my with infection, but as I have recently started exercising, I have noticed a few “one and done” bleeder coughs. ahhh fun stuff! Hopefully my lungs will give me a little break for a while! 🙂

  9. Hi, my name is Hayli Hodsdon I’m 22 and have CF 🙂 I’ve been struggling quite a bit with this whole hemoptysis thing since highschool. I’ve had 4 embolizations, my last one being about 2 years ago. I was doing really well and even ran a marathon last fall, but this year I’ve started up with the blood again 😛 it’s so frustrating! I’m a runner, but whenever I run I feel that gurggle in my lungs, and then POP goes the weasel! My episodes aren’t as extreme as yours were, but they’re frequent, which is why I got the embo’s. I guess ultimately I’m just wondering if you have any tips for exercise that i CAN do when my lungs are in this sensitive stage of teetering on the edge of springing a leak. I’ve been in contact with my doctors about it, and they put me on antibiotics, but the quantity of blood isn’t enough really to do anything drastic to take care of it, but it’s just enough that I need to take a break from cardio exercise and even my vest to keep it from happening. It’s so annoying!

    • CandleWaxidents says:

      @Haylih hiya. It’s crazy that you just posted this. I would love for you to jump over onto my YouTube vlog and continue this discussion. I actually just posted a fitness oriented video that addresses some of your questions right here. I will also be doing a lot more in depth stuff very soon. I am also in the process of partnering with CFF to do a huge CF awareness push and I have a wristband in production along with a clothing line in production. If you wanna see some videos about what we are doing, head over to YouTube and search Reuben Samuels CF. It will bring up my posts and channel: candlewaxidents. The newest post from yesterday is about fitness and previous ones I talk about partnerships and vitamins and the zombie apocalypse 🙂

  10. I have a question. I’m a 31 year old CFer in June and wanted to start running. I’m just wondering how to get started, how long it takes to become able to jog steady, and how often you have to jog to maintain the ability to jog steady.

    • Good questions. I started in February just running 100′ or so for a week during my walks. The length of one townhome building unit. The next week, I ran 2 building units. The next week, I ran 100yds or so. The next week, I ran 200yds. Now I can do 1/4 mile some days and then run a few 100-200yds as long as I bring my heart rate back down.

      I’ve had to concentrate on breathing heavy while I jog and pace myself for the distance I set. I can go a lot faster for 100yds than I can 1/4 mile because I hit an oxygen wall. Hope that helps. Let me know how it goes.

  11. Abraham Martinez says:

    Hey jesse, have you stopped exercising due to your experience? 
    and if not have the bleeds completely stopped even when working out? 

    My doctor doesnt seem to understand my situation.
    so i want to ask people who actually live with cf and have had Hemoptysis.
    Do you get sick (or get infections) more when your working out or when your resting?
    Do you really feel a difference between working out and not working out?
    and last of all, how long has it been since your last bleed?

    im 20 years old, 5’9, and go back and forth between 110-118 pounds,
    i have non classic CF, and unknown gene mutations
    (exept for one apparently common in latinos)
    so no one seems to know much about what treatments will work,
    but i will assume that people who have had hemoptysis should be the same as me
    when it comes to working out.

    i was in the hospital coughing heavy amounts of blood as well.
    i filled my gf’s sink full of blood, splattered her mirror and floor.
    i was trying to wash everything down, but her sink was some what clogged due to the blood.
    i felt as if i was drowning, i kept trying to gasp for air and blood would run into my lungs.
    i was only getting them at nights to, between 11:00pm to 4:00am
    but it got worse after the BAE, and i started to get that every 2 to 4 hours a day.
    i really thought i was gonna die, but i made it thankfully, and i havent had blood or much phlegm in a while.

    i noticed mine was probably linked to high heart rate, exercise, treatments, heavy coughing and using bad positions and strength on my lungs.
    but my doctor apparently thinks it was because i took a huge poop
    even though i havent had any struggles with that in many many years -_-

  12. I have metastatic disease in my lungs and have just started the bleeding.  I find that I cannot take anything that acts like a blood thinner.  No Coumadin, Heparin, Advil or Aspirin for me, even herbal remedies for other things can have a blood-thinning effect.