• Profile photo of RheaRhea
    Member
    #171204612027

    hi

    I used to bleed a lot too. I would wake up drowning in my own blood or sometimes from excersise or my passion, horseback riding would cause it. I had one major bleed where I was at a dance and basically covered the bathroom stall. I had to be taken out of there by ambulance. I was sooo embarrased and everyone was freaking out. I have since been on Mephton or Vit. K which helps clot blood as I have severe liver disfunction from my CF and my platelets and clotting is very low. I find that if I miss taking it I bleed more easily than if i take it everyday.

    Kristy
    22f/cf/cfrd/cfliverdisease/waiting for lung and liver transplant 3 months

    Profile photo of hepcathepcat
    Member
    #171204611976

    Eliana,
    I have had many episodes of hemoptysis, both minor and major. It was never easy, or easy to accept it. I know I asked my CF center to explain them to me, hoping that would ease my mind… it did. They explained a capillary and broken, ” a tiny, tiny, tiny blood vessel”. Some reason repeating that over and over in my head helped me get through it.

    After 2 major hemoptysis, I decided I could not stand it anymore. So I said ” new lungs please” Coughing up blood the major reason I wanted new lungs. Having never to think about it, worry about it is wonderful.

    Are you on Mypheton?

    Joanne Schum
    luckylungsforjo@aol.com

    Profile photo of azulpalidaazulpalida
    Member
    #171204611936

    Thanks guys, good to know I’m not the only one who gets freaked out about this. I’m very fortunate that it hasn’t been happening nearly as much as it used to, for some reason after my last tune up the frequency dropped dramatically even though I’d had other tune ups before that didn’t really affect bleeding, I don’t know what made the difference but I’m not complaining! I try to keep track of when I bleed though, and if the episodes start getting closer together I start worrying again. I also have found in the past that it would often happen after I layed down flat on my back, but I have more trouble breathing in general when I lay flat on my back so I generally try to avoid it anyway. Sometimes I can kind of feel it rattling in a particular spot in my chest, but I’ve never felt it in my throat before. Weird stuff, yuck yuck yuck… but after about a day of feeling totally gross and worn out I feel much better now fortunately!

    Eliana
    25 w/ cf

    Profile photo of kwalnykwalny
    Member
    #171204611865

    I forgot to mention something and realized it after reading Kelli’s response. I have also noticed laying down flat to be a cause of hemoptysis. When i had my first major episode that led me to have my first embolization, i was sound asleep and when i rolled over the bleeding started and wouldnt stop. ( a lousy way to be awakened at 3:30 am) Then while thinking back i realized a whole lot of times i had hemoptysis was while laying down flat. After my first embolization ( they basically cauterize the broken blood vessel) i thought it was safe to lay flat again, but 2 days later some bleeding started again. Then a month later once again, the major bleeding happened again ( this time from a different vessel), and i had a second embolization. That was 2 years ago and since then i still cough up some blood, but thank God it isnt large amounts. I do not lay flat to sleep at all anymore. I purchased a wedge pillow and sleep with my upper body raised which has helped control the bleeding that seems to accompany laying down flat. If you continue to have problems that seem to stem from laying down flat to sleep, you may want to consider not laying down flat to help avoid the problem. Or at least avoid laying flat till the bleeding has stopped for a while.
    ~Diane 39 / cf / diabetes / b.cepacia

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204610878

    Anytime I eat ice, icecream, ect; I cough way worse and harder than usual and sometimes I bring up blood. I had a really bad spell in the hospital earlier this year and lost almost 4 liters.(not coughing, vomitting) Had a endoscopy and found some varesis(sp?) viens. I was put on propranalol to keep my blood pressure down so when I coughed HARD, my pressure wouldn’t pop anymore vessels. Works pretty good, but do still cough up blood when I lay down sometimes.

    Does anyone ever feel like it comes from a vessel in your neck or throat? Sometimes if I press two fingers on the major vein in my neck, it immediatly stops. Very weird, and when you try to tell the doctors this, they act like you are just plain ignorant.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204611786

    Anytime I eat ice, icecream, ect; I cough way worse and harder than usual and sometimes I bring up blood. I had a really bad spell in the hospital earlier this year and lost almost 4 liters.(not coughing, vomitting) Had a endoscopy and found some varesis(sp?) viens. I was put on propranalol to keep my blood pressure down so when I coughed HARD, my pressure wouldn’t pop anymore vessels. Works pretty good, but do still cough up blood when I lay down sometimes.

    Does anyone ever feel like it comes from a vessel in your neck or throat? Sometimes if I press two fingers on the major vein in my neck, it immediatly stops. Very weird, and when you try to tell the doctors this, they act like you are just plain ignorant.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204610873

    Hey Elaina,
    Oh, I know where you are coming from. It is so irritating! And to try to get to the root of the problem is just as frustrating! I cough up blood ALL the time. I will do it everyday for months at a time, (like 6 months straight.) I will be fine all day and then, as soon as I lay down for bed, I feel my lungs almost filling up with blood. Sometimes I cry which makes it worse. But I get so mad/disappointed/scared/ annyoyed, etc. that my emotions must erupt someway.
    I asked my dr’s time and time again, and they just say it’s a localized infection. I want them to find the problem and cottorize it, what ever. I want it done with. They did a bronch and found nothing. Mine has no rhyme or reason, it happens out of the blue.
    So yeah, I can understand your frustration, you are not wacko. It is totally annoying and I hate it. I once bled so bad that I had my husband call my parents and sister to our house because I seriously thought I was going to bleed to death. And it’s not that our hospital can do anything, they are too afraid to touch me. Liability.
    I don’t know any remedy to the problem. Some people say cold water, however, last night I was eating popcicles (popcicles=cold) and coughed blood out. Um, how does this happen. It’s gross and scary. I guess the best thing to do is just keep calm.
    Good luck to you!!!
    Sincerely-
    Kelli
    27 y.o. female with CF

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204611781

    Hey Elaina,
    Oh, I know where you are coming from. It is so irritating! And to try to get to the root of the problem is just as frustrating! I cough up blood ALL the time. I will do it everyday for months at a time, (like 6 months straight.) I will be fine all day and then, as soon as I lay down for bed, I feel my lungs almost filling up with blood. Sometimes I cry which makes it worse. But I get so mad/disappointed/scared/ annyoyed, etc. that my emotions must erupt someway.
    I asked my dr’s time and time again, and they just say it’s a localized infection. I want them to find the problem and cottorize it, what ever. I want it done with. They did a bronch and found nothing. Mine has no rhyme or reason, it happens out of the blue.
    So yeah, I can understand your frustration, you are not wacko. It is totally annoying and I hate it. I once bled so bad that I had my husband call my parents and sister to our house because I seriously thought I was going to bleed to death. And it’s not that our hospital can do anything, they are too afraid to touch me. Liability.
    I don’t know any remedy to the problem. Some people say cold water, however, last night I was eating popcicles (popcicles=cold) and coughed blood out. Um, how does this happen. It’s gross and scary. I guess the best thing to do is just keep calm.
    Good luck to you!!!
    Sincerely-
    Kelli
    27 y.o. female with CF

    Profile photo of kwalnykwalny
    Member
    #171204610860

    Hi Eliana,
    I know exactly the way you feel about it. Each time i would cough up blood i felt like my lungs were betraying me. Its a total let down, and scary as can be. I have had several major epiodes that required me to have two pulmonary embolizations. Scariest thing in life i have ever gone thru. I also know what you mean about coughing up blood in front of other people, its not exactly the way you want people to learn about some of the complications of cf. When i had a major episode while in the hospital and called for the nurse, about 3 or 4 came running in and did nothing but panic. THAT was not exactly comforting and it made me feel even more scared knowing they didnt know what to do
    Then i had a resident sit beside me and ask if i want him to pat me on the back That totally infuriated me !! He should know better than to hit someone on the back while they are coughing up blood.
    The best thing you can do is try to remain calm when you do cough up any blood . Access how much you are coughing out and if it is more than what you are comfortable with, call your doctor. I wish there was a way to strengthen our blood vessels so this wouldnt happen anymore to any of us.
    ~Diane 39 / cf / diabetes / b.cepacia

    Profile photo of kwalnykwalny
    Member
    #171204611771

    Hi Eliana,
    I know exactly the way you feel about it. Each time i would cough up blood i felt like my lungs were betraying me. Its a total let down, and scary as can be. I have had several major epiodes that required me to have two pulmonary embolizations. Scariest thing in life i have ever gone thru. I also know what you mean about coughing up blood in front of other people, its not exactly the way you want people to learn about some of the complications of cf. When i had a major episode while in the hospital and called for the nurse, about 3 or 4 came running in and did nothing but panic. THAT was not exactly comforting and it made me feel even more scared knowing they didnt know what to do
    Then i had a resident sit beside me and ask if i want him to pat me on the back That totally infuriated me !! He should know better than to hit someone on the back while they are coughing up blood.
    The best thing you can do is try to remain calm when you do cough up any blood . Access how much you are coughing out and if it is more than what you are comfortable with, call your doctor. I wish there was a way to strengthen our blood vessels so this wouldnt happen anymore to any of us.
    ~Diane 39 / cf / diabetes / b.cepacia

    Profile photo of Starfall99Starfall99
    Participant
    #1715279

    Been lurking on and off for a while, figured I’d try posting…

    Just venting… I HATE coughing up blood, it’s the one time I feel really frighteningly SICK. I mean, coughing, nebulizers, medication, a lot of people do those things with far less serious illnesses than CF, but suddenly unexpectedly spitting up gobs of blood is really pretty scary and gross. Especially when it happens in front of other people, like it did yesterday when I was at work, and not only do I have to deal with them being horrified but I have to play it off like “Oh I’m fine, this happens sometimes, not a problem” to keep them from freaking. It hasn’t been happening often lately (like once every 3-6 months or so… unlike when it’s tune up time when it happens a few times a week) and I’ve never had a major hemmorrage so it’s usually only a couple tablespoons or at most ounces (knock on wood…), but it still freaks me out… And I always feel so gross and run down afterwards, I’m in grad school and I missed my 2 classes today b/c I was just too worn out to handle driving into school and then going to work afterwards (which is probably what my lungs were trying to tell me in the first place… working full time + 3 graduate classes with lots of papers = much stress and badness). YUCK!!!

    Do you guys do this too? Does anyone else react so strongly to it, or is it just me being a wacko?

    Going back to bed now… stupid lungs…

    Eliana
    25 w/ cf

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