Question...and first time...let's see how it goes.

[Justin Daniel Weintraub]

Hey guys, just joined the forum after a long time of holding back from doing so. Here I am, with a question concerning my health.
Here is a but of a brief synopsis...had cf since i was 15 mo's old, i dont know what mutation i have but ive been told ive had the ashkenzai jew strain? dont know what that means...had fev1's up to 60 as a child through to HS, most i weighed was 230 pounds in high school-got careless with my enzymes in college and lost a lot. i now weigh 170lbs at 24 years old-living on my own for the first time from home after college with a job teaching autistic students...fev1's are around 27(thru30 on a bad day)-35(as my optimal lately). my last clean out was this past february where i was admitted to a hospital for my first time-all other clean outs were in home. ive had a total of 4 clean outs. i am now on oxygen as needed, which is a lot. i now acquired it where i can take it to work with me during the day which is where i mainly use it-unless i am just resting in my room and using the concentrator. (been a bummer adjusting to it...weird, very weird)

anyway...so here is my question
tonight i coughed up blood. it looked like a lot, for me at least. i usually cough up blood in very small streaks or dots within my mucus. and lessens over time after thorough clearouts and a treatment. tonight, i coughed during a typical spasm and it looked majority blood, with some mucus still. i then went to saline and acapella in panic, and the blood has decreased....what does it mean to YOU to cough up blood? what does it mean in general-if there is? also-i am in no pain. no chest pains. i do have a mildy high blood pressure (usually 116-122) my o2 levels range from 84/85 with exertion and 92 at rest.

ALSO-i take TOBI thru my nebulizer. i do it on and off every month. this is my off month, but i took it last night. i took it last night in wanting to return to work from my vacation in a good, well rested mode-thinking i would get it wth the little extra treatment. i couldnt even sleep last night. tossing, turning, coughing. and i dont think i recall having such a bad sleep since it was my last on month with the TOBI...could it be ive sort of "grown" out or away from this medicine?

what do you all think....this is my first post on anything remotely dealing with CF....ive been so hesitant.....hear from you soon...?

 

[Twistofchaos]

Hi there and welcome!

Sorry to hear your health has been in decline. But well done on living on your own!

Such big lungbleeds while ugly and scary in and of itself doesn't have to mean something significant. Well it could be, but your lungs are exchanging gasses from the air with your blood and so have tiny thin bloodvessels and it's easy for one to pop once in a while when something is going on.

With CF something is going on almost always, there can be several causes and so you can't just say you have a major infection going on now. (But there could be.)

Personally for example I had the same vein pop on me a couple times in a year giving me substantial lungbleeds with 1-2 cups of blood each time but no significant infection.
Talk was to then fix this weak vein but it stopped by itself and then I had no lungbleeds for years.

Ofcourse you should call your CF team when one has happened. And too much blood is dangerous so when they happen you want to be ready to head to your CF team or even ER..

Saline dissolves blood clotting so it wouldn't be my weapon of choice while or directly after a lung bleed. But I've no idea what is. Maybe others know of methods to stop a lung bleed. Might be a bit of a black art.

Yeah reading or hanging out at CF fora can be somehow comforting (you recognise lots in other people and vice versa that you don't normally see) but confrontational at the same time.
For me it comes and goes.

 

[JustDucky]

I would let your team know what's up...usually pulmozyme, HTS, etc is held for a day or so. I have had a few minor incidents with a few tablespoons of blood at most. For me, it signified the onset of an infection and I went on IV's to knock it out. I also held chest physio for a day or two...the doc will most likely give you the same advice. I know how scary this is...I normally streak on and off, but when you see that frank blood, it is frightening! Hang in there, call your doc to update him . Hopefully, things quiet down for you.

Jenn 41 wCF

 

[MichaelL]

I have coughed up blood several times in the last year. My CF clinic put me on Vitamin K, which has definitely helped me. I was initially taking hypertonic salines twice a day, and they also cut me to once a day.

As commented above, you should definitely check with your CF team. They will be interested in you quantifying how much blood you've coughed up (e.g., half a cup, a couple tablespoons, etc.).

Good luck -- I hope you can get it under control.