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Daughter coughing up blood
- Thread starter elliesmom
- Start date
This is so similar to me. I coughed up blood my first week away at college (which is not something your mom wants to hear on the phone your first week away, as I'm sure you can sympathize...) and freaked out, it had never happened before. I called my doc, and they held my Pulmozyme and CPT for 48 (72, maybe?) hours; I got progressively sicker, and they put me on Prednisone for 6 days, because it kept happening. Not much, but it was definitely blood. It happened last Monday...and now I'm in the hospital, for the first time in my life, with an exacerbation.
This is so similar to me. I coughed up blood my first week away at college (which is not something your mom wants to hear on the phone your first week away, as I'm sure you can sympathize...) and freaked out, it had never happened before. I called my doc, and they held my Pulmozyme and CPT for 48 (72, maybe?) hours; I got progressively sicker, and they put me on Prednisone for 6 days, because it kept happening. Not much, but it was definitely blood. It happened last Monday...and now I'm in the hospital, for the first time in my life, with an exacerbation.
This is so similar to me. I coughed up blood my first week away at college (which is not something your mom wants to hear on the phone your first week away, as I'm sure you can sympathize...) and freaked out, it had never happened before. I called my doc, and they held my Pulmozyme and CPT for 48 (72, maybe?) hours; I got progressively sicker, and they put me on Prednisone for 6 days, because it kept happening. Not much, but it was definitely blood. It happened last Monday...and now I'm in the hospital, for the first time in my life, with an exacerbation.
I had my first spell of hemoptysis at eighteen too, the weekend after graduation. It was super scary. Nobody had ever told me that it was something that could/would happen. Now I have hemoptysis every once in a while, but it's usually not so bad. Inflammation in the lungs due to allergies, exercise-induced asthma, etc. can cause it. Infection can cause it. After your opened lung vessel heals, it will always be a vulnerable spot in your lungs, and will be more likely to open at that spot later. PMS week - right before period - is when I'm most likely to have hemoptysis. I'm also more likely to have it as soon as I lie down to go to bed, when the blood pressure is more concentrated in the chest than it is in the extremeties. I take Vitamin K twice a week to try to ward it off. Tell your daughter to hang in there - lungs feel pretty crappy when they're healing from hemoptysis - literally an itch you can't scratch. Hope she does well in her cross country meets : )
I had my first spell of hemoptysis at eighteen too, the weekend after graduation. It was super scary. Nobody had ever told me that it was something that could/would happen. Now I have hemoptysis every once in a while, but it's usually not so bad. Inflammation in the lungs due to allergies, exercise-induced asthma, etc. can cause it. Infection can cause it. After your opened lung vessel heals, it will always be a vulnerable spot in your lungs, and will be more likely to open at that spot later. PMS week - right before period - is when I'm most likely to have hemoptysis. I'm also more likely to have it as soon as I lie down to go to bed, when the blood pressure is more concentrated in the chest than it is in the extremeties. I take Vitamin K twice a week to try to ward it off. Tell your daughter to hang in there - lungs feel pretty crappy when they're healing from hemoptysis - literally an itch you can't scratch. Hope she does well in her cross country meets : )
I had my first spell of hemoptysis at eighteen too, the weekend after graduation. It was super scary. Nobody had ever told me that it was something that could/would happen. Now I have hemoptysis every once in a while, but it's usually not so bad. Inflammation in the lungs due to allergies, exercise-induced asthma, etc. can cause it. Infection can cause it. After your opened lung vessel heals, it will always be a vulnerable spot in your lungs, and will be more likely to open at that spot later. PMS week - right before period - is when I'm most likely to have hemoptysis. I'm also more likely to have it as soon as I lie down to go to bed, when the blood pressure is more concentrated in the chest than it is in the extremeties. I take Vitamin K twice a week to try to ward it off. Tell your daughter to hang in there - lungs feel pretty crappy when they're healing from hemoptysis - literally an itch you can't scratch. Hope she does well in her cross country meets : )
katedids74
New member
My story is most like everyone else that commented. It started in college for me as well and then was continuing to happen on a regular basis. The found where the bleed was in my lungs and went in through my groin and did a cauterization at maybe the age of 22, I am only ever coughed up blood once since then and I am now 36, turning 37. It is very terrifying at first but then I got to the put where I could tell it was going to happen and it normally stopped after about 15 minutes.
katedids74
New member
My story is most like everyone else that commented. It started in college for me as well and then was continuing to happen on a regular basis. The found where the bleed was in my lungs and went in through my groin and did a cauterization at maybe the age of 22, I am only ever coughed up blood once since then and I am now 36, turning 37. It is very terrifying at first but then I got to the put where I could tell it was going to happen and it normally stopped after about 15 minutes.
katedids74
New member
My story is most like everyone else that commented. It started in college for me as well and then was continuing to happen on a regular basis. The found where the bleed was in my lungs and went in through my groin and did a cauterization at maybe the age of 22, I am only ever coughed up blood once since then and I am now 36, turning 37. It is very terrifying at first but then I got to the put where I could tell it was going to happen and it normally stopped after about 15 minutes.
I am 28 years old and coughed up blood for the first time in January 2011. It was very mild streaking. I was immediately admitted to the hospital and began a two week IV course. I had been running a chronic fever for nearly a year prior to experiencing hemoptysis, but my chest x-rays, blood work, and CF clinic appts. were always great. Needless to say so one ever figured out the cause of my low grade fevers, although I believe it's caused by reflux of undigested stomach content at night (nocturnal aspiration) which causes inflammation and then bleeds.
Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
I am 28 years old and coughed up blood for the first time in January 2011. It was very mild streaking. I was immediately admitted to the hospital and began a two week IV course. I had been running a chronic fever for nearly a year prior to experiencing hemoptysis, but my chest x-rays, blood work, and CF clinic appts. were always great. Needless to say so one ever figured out the cause of my low grade fevers, although I believe it's caused by reflux of undigested stomach content at night (nocturnal aspiration) which causes inflammation and then bleeds.
Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
I am 28 years old and coughed up blood for the first time in January 2011. It was very mild streaking. I was immediately admitted to the hospital and began a two week IV course. I had been running a chronic fever for nearly a year prior to experiencing hemoptysis, but my chest x-rays, blood work, and CF clinic appts. were always great. Needless to say so one ever figured out the cause of my low grade fevers, although I believe it's caused by reflux of undigested stomach content at night (nocturnal aspiration) which causes inflammation and then bleeds.
<br />
<br />Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
<br />
<br />My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
<br />
<br />
<br />
<br />Three weeks after being released from the hospital I drank a bottle of water and sat down on the sofa to watch TV. I smelled and tasted blood. I stood up and blood started gushing. I lost a lot of blood and had to be rushed to the ER. Nearly 12 hours later my lung was still bleeding and my chest was in a lot of pain. I was experiencing massive hemoptysis. I wish I had known hemoptysis was a problem in CF and what to do should I experience massive hemoptysis, but my lung function was great--so I suppose my doctor never thought to tell me what to do. I had to have an emergency embolization and spent 5 days in ICU. Hemoptysis can be life threatening and was life threatening in my case. Even though my left lung was embolized, I continue to experience hemoptysis.
<br />
<br />My lung function looks great on paper. But I am always sick, running fevers, and going on IV meds. The only two antibiotics that help me are Zosyn and Augmentin. I still believe refluxing undigested food (I have gastroparesis also known as delayed gastric emptying) is aspirating into my airways leading to inflammation and then hemoptysis. But since this has not been "proven" in research...my concern continues to get ignored.
<br />
<br />
I also want to add that you never know if you or your child with CF is going to experience massive hemoptysis. Do not take the "wait and see" approach. Be prepared and make sure your health care team and school nurse is informed about this potential complication. It can turn into a life threatening situation quickly. My first experience with hemoptysis was merely mild streaks of blood in my sputum. It went away within two days of IV antibiotics. But returned with a vegence three weeks after finishing up a two week course of IV antibiotics. Hemoptysis can be caused by infection, inflammation in the airways, allergens (be careful of cosmetic products and hair products with strong smell) and many of us women with CF experience hemoptysis one week or a few days prior to or the beginning of our menstrual cycle.
I also want to add that you never know if you or your child with CF is going to experience massive hemoptysis. Do not take the "wait and see" approach. Be prepared and make sure your health care team and school nurse is informed about this potential complication. It can turn into a life threatening situation quickly. My first experience with hemoptysis was merely mild streaks of blood in my sputum. It went away within two days of IV antibiotics. But returned with a vegence three weeks after finishing up a two week course of IV antibiotics. Hemoptysis can be caused by infection, inflammation in the airways, allergens (be careful of cosmetic products and hair products with strong smell) and many of us women with CF experience hemoptysis one week or a few days prior to or the beginning of our menstrual cycle.
I also want to add that you never know if you or your child with CF is going to experience massive hemoptysis. Do not take the "wait and see" approach. Be prepared and make sure your health care team and school nurse is informed about this potential complication. It can turn into a life threatening situation quickly. My first experience with hemoptysis was merely mild streaks of blood in my sputum. It went away within two days of IV antibiotics. But returned with a vegence three weeks after finishing up a two week course of IV antibiotics. Hemoptysis can be caused by infection, inflammation in the airways, allergens (be careful of cosmetic products and hair products with strong smell) and many of us women with CF experience hemoptysis one week or a few days prior to or the beginning of our menstrual cycle.
L
lizlas
Guest
<P>I read your blog Meranda, how terrifying for you !! really informative. IV abx always used to take care of any small hemoptysis, but latley it has been happening too frequently....I m on my 3rd round ov IVs since april to kep it away...rite now Tasozan going into my 4th week, our plan is 5 or 6 weeks....thank god no drug fever..(.knock wood)</P>
<P>what a bunch of incompetent boobs in the E.R. !!! to take that long to get to a CF specialist is just totally unacceptable and to leave you just bleeding like that in the E. R. is absurd....!!!! If you havent done so, perhaps you should lodge a complaint with Admin. so that this never happens again!</P>
<P>I believe if we go into our clinic with bad hemoptysis, our CF deptmartment is called immediatley, I will recheck on that....</P>
<P>yes go over with family members what they need to say and do, if you are unable to speak for yourself.! and check with your CF clinic Dr.,what the procedure is at your hospital E.R...</P>
<P>I think I will put my emergency numbers more visible here at my desk....I know I would be in utter panic!</P>
<P>Meranda, have your Drs not considered doing another embo procedure to look for the other vessels that are still bleeding.? Try to get them all embo'd before they get worse? I know on other posts here they keep looking til they get them all...</P>
<P>thanks for sharing your story!</P>
<P>Liz</P>
<P>what a bunch of incompetent boobs in the E.R. !!! to take that long to get to a CF specialist is just totally unacceptable and to leave you just bleeding like that in the E. R. is absurd....!!!! If you havent done so, perhaps you should lodge a complaint with Admin. so that this never happens again!</P>
<P>I believe if we go into our clinic with bad hemoptysis, our CF deptmartment is called immediatley, I will recheck on that....</P>
<P>yes go over with family members what they need to say and do, if you are unable to speak for yourself.! and check with your CF clinic Dr.,what the procedure is at your hospital E.R...</P>
<P>I think I will put my emergency numbers more visible here at my desk....I know I would be in utter panic!</P>
<P>Meranda, have your Drs not considered doing another embo procedure to look for the other vessels that are still bleeding.? Try to get them all embo'd before they get worse? I know on other posts here they keep looking til they get them all...</P>
<P>thanks for sharing your story!</P>
<P>Liz</P>