Hi, my names Clarice, I'm 19 years old and I've had this forum for a while now, but this is my first write in. My entire life my lungs have been incredibly healthy, always above the 100 percentile, but since I've gone to college, my lung function has significantly dropped because of my lack in doing treatments. A couple months ago I was hospitalized for having pnemonia and was put on antibiotics that brought my lung function back to about a 95 to 100. But since I left they dropped back down to a 70, and they found more bacteria, so now I'm back on antibiotics. My lungs hurt, I can't stop coughing and breathings becoming a challenge and has been for many months, and I just coughed up blood for the first time tonight. It wasn't a lot that came out, but it was enough to freak me out. I know I do a ***** job at taking care of myself, and I make very bad decissions that I don't understand why I do, but the fact that this just happened is terrifying me. I just want to be okay, and I need to know I can be okay, and the fact that I feel like I'm fighting this disease 100% on my own, is even worse. I just need to know what to do...
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complicated situation..
- Thread starter cbelle531
- Start date
Hi, my names Clarice, I'm 19 years old and I've had this forum for a while now, but this is my first write in. My entire life my lungs have been incredibly healthy, always above the 100 percentile, but since I've gone to college, my lung function has significantly dropped because of my lack in doing treatments. A couple months ago I was hospitalized for having pnemonia and was put on antibiotics that brought my lung function back to about a 95 to 100. But since I left they dropped back down to a 70, and they found more bacteria, so now I'm back on antibiotics. My lungs hurt, I can't stop coughing and breathings becoming a challenge and has been for many months, and I just coughed up blood for the first time tonight. It wasn't a lot that came out, but it was enough to freak me out. I know I do a ***** job at taking care of myself, and I make very bad decissions that I don't understand why I do, but the fact that this just happened is terrifying me. I just want to be okay, and I need to know I can be okay, and the fact that I feel like I'm fighting this disease 100% on my own, is even worse. I just need to know what to do...
Hi Clarice!
You posted this twice?
In case you don't read my other reply, here it is again:
Of course you're scared, no wonder. Coughing up blood is also quite new to me, I think it happened the first time in 2009 after years of doing fine. (butI had moved back to humid climate, as when I was born, I'm wondering if that is affecting me so now I moved back to dry)
Anyway, doctors told me 1) it's not of real concern unless you cough up 100 ml of blood. 2) coughing up blood is usually linked to bacterial growth so you might need antibiotics. And indeed, as Mike says, by all means STOP all treatments that make you cough in the 1-2 days following the event! The bleeding usually just stops on its own if you take it easy (if you keep bleeding you need to get to an ER and be embolized, though, so do take it easy!).
I've been there (went to study abroad, being fairly "on my own" medically), but please see to make your health a priority, in spite of college life. Join swimming class and don't forget your meds! You overall waste much less time by keeping healthy (that's just 1-3 hours a day) than in those bouts of being totally sick and unable to do anything else (24 hours a day for weeks).
You posted this twice?
In case you don't read my other reply, here it is again:
Of course you're scared, no wonder. Coughing up blood is also quite new to me, I think it happened the first time in 2009 after years of doing fine. (butI had moved back to humid climate, as when I was born, I'm wondering if that is affecting me so now I moved back to dry)
Anyway, doctors told me 1) it's not of real concern unless you cough up 100 ml of blood. 2) coughing up blood is usually linked to bacterial growth so you might need antibiotics. And indeed, as Mike says, by all means STOP all treatments that make you cough in the 1-2 days following the event! The bleeding usually just stops on its own if you take it easy (if you keep bleeding you need to get to an ER and be embolized, though, so do take it easy!).
I've been there (went to study abroad, being fairly "on my own" medically), but please see to make your health a priority, in spite of college life. Join swimming class and don't forget your meds! You overall waste much less time by keeping healthy (that's just 1-3 hours a day) than in those bouts of being totally sick and unable to do anything else (24 hours a day for weeks).
Hi Clarice!
You posted this twice?
In case you don't read my other reply, here it is again:
Of course you're scared, no wonder. Coughing up blood is also quite new to me, I think it happened the first time in 2009 after years of doing fine. (butI had moved back to humid climate, as when I was born, I'm wondering if that is affecting me so now I moved back to dry)
Anyway, doctors told me 1) it's not of real concern unless you cough up 100 ml of blood. 2) coughing up blood is usually linked to bacterial growth so you might need antibiotics. And indeed, as Mike says, by all means STOP all treatments that make you cough in the 1-2 days following the event! The bleeding usually just stops on its own if you take it easy (if you keep bleeding you need to get to an ER and be embolized, though, so do take it easy!).
I've been there (went to study abroad, being fairly "on my own" medically), but please see to make your health a priority, in spite of college life. Join swimming class and don't forget your meds! You overall waste much less time by keeping healthy (that's just 1-3 hours a day) than in those bouts of being totally sick and unable to do anything else (24 hours a day for weeks).
You posted this twice?
In case you don't read my other reply, here it is again:
Of course you're scared, no wonder. Coughing up blood is also quite new to me, I think it happened the first time in 2009 after years of doing fine. (butI had moved back to humid climate, as when I was born, I'm wondering if that is affecting me so now I moved back to dry)
Anyway, doctors told me 1) it's not of real concern unless you cough up 100 ml of blood. 2) coughing up blood is usually linked to bacterial growth so you might need antibiotics. And indeed, as Mike says, by all means STOP all treatments that make you cough in the 1-2 days following the event! The bleeding usually just stops on its own if you take it easy (if you keep bleeding you need to get to an ER and be embolized, though, so do take it easy!).
I've been there (went to study abroad, being fairly "on my own" medically), but please see to make your health a priority, in spite of college life. Join swimming class and don't forget your meds! You overall waste much less time by keeping healthy (that's just 1-3 hours a day) than in those bouts of being totally sick and unable to do anything else (24 hours a day for weeks).
Incomudrox
New member
I moved this thread hopefully we can help you better in here as this section gets much more traffic.
I agree with everything that has been already said I don't have much else to add.
I would say whatever you do, DO NOT rush to the ER unless you are drowning in your own blood. If you go in coughing blood they are likely to do drastic things to stop that bleed. Call your CF doctor let them know what's doing on and let them make the call. Use common sense. They may prescribe you Mephyton (Vitamin K) to help stop the bleeding, be sure not to take too much though! Usually they will have you taking 5mg as needed for bleeding but not more than one per day.
If you have a semi-urgent issue with it and are in pain you should probably go back for IV abx OR orals + Inhaled abx. You may continue to bleed but if it gets better (aka infection in remission) it will slowly go away and stop. Pulmozyme and HTS shouldn't be used for 24-48 hours. The doctors are there to advise you through this if they are good ones they'll do a good job. Most doctors (given your FEV1) would likely tell you to do inhaled abx through the bleed unless it gets worse. Given someone with much more lung damage the situation maybe different.
So to recap... call your doctors let them know what's going on. Use common sense you seem like you have the right idea you are looking for help that's awesome.
Also - can you give more detail was it blood mixed with mucus (pink and cloudy) or streaks of blood brighter red running through the mucus, or blood with no-mucus (bright red? dark red? thick or thin?)
-Frank/Forum Moderator.
I agree with everything that has been already said I don't have much else to add.
I would say whatever you do, DO NOT rush to the ER unless you are drowning in your own blood. If you go in coughing blood they are likely to do drastic things to stop that bleed. Call your CF doctor let them know what's doing on and let them make the call. Use common sense. They may prescribe you Mephyton (Vitamin K) to help stop the bleeding, be sure not to take too much though! Usually they will have you taking 5mg as needed for bleeding but not more than one per day.
If you have a semi-urgent issue with it and are in pain you should probably go back for IV abx OR orals + Inhaled abx. You may continue to bleed but if it gets better (aka infection in remission) it will slowly go away and stop. Pulmozyme and HTS shouldn't be used for 24-48 hours. The doctors are there to advise you through this if they are good ones they'll do a good job. Most doctors (given your FEV1) would likely tell you to do inhaled abx through the bleed unless it gets worse. Given someone with much more lung damage the situation maybe different.
So to recap... call your doctors let them know what's going on. Use common sense you seem like you have the right idea you are looking for help that's awesome.
Also - can you give more detail was it blood mixed with mucus (pink and cloudy) or streaks of blood brighter red running through the mucus, or blood with no-mucus (bright red? dark red? thick or thin?)
-Frank/Forum Moderator.
Incomudrox
New member
I moved this thread hopefully we can help you better in here as this section gets much more traffic.
I agree with everything that has been already said I don't have much else to add.
I would say whatever you do, DO NOT rush to the ER unless you are drowning in your own blood. If you go in coughing blood they are likely to do drastic things to stop that bleed. Call your CF doctor let them know what's doing on and let them make the call. Use common sense. They may prescribe you Mephyton (Vitamin K) to help stop the bleeding, be sure not to take too much though! Usually they will have you taking 5mg as needed for bleeding but not more than one per day.
If you have a semi-urgent issue with it and are in pain you should probably go back for IV abx OR orals + Inhaled abx. You may continue to bleed but if it gets better (aka infection in remission) it will slowly go away and stop. Pulmozyme and HTS shouldn't be used for 24-48 hours. The doctors are there to advise you through this if they are good ones they'll do a good job. Most doctors (given your FEV1) would likely tell you to do inhaled abx through the bleed unless it gets worse. Given someone with much more lung damage the situation maybe different.
So to recap... call your doctors let them know what's going on. Use common sense you seem like you have the right idea you are looking for help that's awesome.
Also - can you give more detail was it blood mixed with mucus (pink and cloudy) or streaks of blood brighter red running through the mucus, or blood with no-mucus (bright red? dark red? thick or thin?)
-Frank/Forum Moderator.
I agree with everything that has been already said I don't have much else to add.
I would say whatever you do, DO NOT rush to the ER unless you are drowning in your own blood. If you go in coughing blood they are likely to do drastic things to stop that bleed. Call your CF doctor let them know what's doing on and let them make the call. Use common sense. They may prescribe you Mephyton (Vitamin K) to help stop the bleeding, be sure not to take too much though! Usually they will have you taking 5mg as needed for bleeding but not more than one per day.
If you have a semi-urgent issue with it and are in pain you should probably go back for IV abx OR orals + Inhaled abx. You may continue to bleed but if it gets better (aka infection in remission) it will slowly go away and stop. Pulmozyme and HTS shouldn't be used for 24-48 hours. The doctors are there to advise you through this if they are good ones they'll do a good job. Most doctors (given your FEV1) would likely tell you to do inhaled abx through the bleed unless it gets worse. Given someone with much more lung damage the situation maybe different.
So to recap... call your doctors let them know what's going on. Use common sense you seem like you have the right idea you are looking for help that's awesome.
Also - can you give more detail was it blood mixed with mucus (pink and cloudy) or streaks of blood brighter red running through the mucus, or blood with no-mucus (bright red? dark red? thick or thin?)
-Frank/Forum Moderator.
Hi Clarice,
Firstly, well done for making contact about this. CanI give you some urgent advice? What you are experiencingis a warning call from your body- it is not liking your lack of attention and believe me you are playing with fire.
I had a blissful, practically cf-free childhood and teen-hood. When social life kicked in around age 17 I started to notice things change. Fast forward 5 years to me in college and boy oh boy do I wish someone had sat me down and given me a good yelling.
You're blessed with good basal health- that is a gift that you HAVE to preserve because so easily, like without you even realising, it could be ripped from under you and you will wish with all your might you hadn't messed around.
If this sounds dramatic then, maybe it should. I just cannot over emphasise the need for you to take a new approach. Get exercising. Get doing ALL your meds. Look after your nutrition. Look after yourself. You have no choice here ok? The alternative is f***ing awful. I wa ssooo lucky to spring back from my rebellion and I actually shudder to think of the risks I took. I just didn't have a clue what I was doing. Please please listen up- the days of med skipping have to be over or else you won't have a life to distract you from them.
It is possible to keep up with all aspects of college life while being compliant- choose carefully who you hang out with- be with the sporty people, train with friends and you're more likely to succeed.
Good luck x
Firstly, well done for making contact about this. CanI give you some urgent advice? What you are experiencingis a warning call from your body- it is not liking your lack of attention and believe me you are playing with fire.
I had a blissful, practically cf-free childhood and teen-hood. When social life kicked in around age 17 I started to notice things change. Fast forward 5 years to me in college and boy oh boy do I wish someone had sat me down and given me a good yelling.
You're blessed with good basal health- that is a gift that you HAVE to preserve because so easily, like without you even realising, it could be ripped from under you and you will wish with all your might you hadn't messed around.
If this sounds dramatic then, maybe it should. I just cannot over emphasise the need for you to take a new approach. Get exercising. Get doing ALL your meds. Look after your nutrition. Look after yourself. You have no choice here ok? The alternative is f***ing awful. I wa ssooo lucky to spring back from my rebellion and I actually shudder to think of the risks I took. I just didn't have a clue what I was doing. Please please listen up- the days of med skipping have to be over or else you won't have a life to distract you from them.
It is possible to keep up with all aspects of college life while being compliant- choose carefully who you hang out with- be with the sporty people, train with friends and you're more likely to succeed.
Good luck x
Hi Clarice,
Firstly, well done for making contact about this. CanI give you some urgent advice? What you are experiencingis a warning call from your body- it is not liking your lack of attention and believe me you are playing with fire.
I had a blissful, practically cf-free childhood and teen-hood. When social life kicked in around age 17 I started to notice things change. Fast forward 5 years to me in college and boy oh boy do I wish someone had sat me down and given me a good yelling.
You're blessed with good basal health- that is a gift that you HAVE to preserve because so easily, like without you even realising, it could be ripped from under you and you will wish with all your might you hadn't messed around.
If this sounds dramatic then, maybe it should. I just cannot over emphasise the need for you to take a new approach. Get exercising. Get doing ALL your meds. Look after your nutrition. Look after yourself. You have no choice here ok? The alternative is f***ing awful. I wa ssooo lucky to spring back from my rebellion and I actually shudder to think of the risks I took. I just didn't have a clue what I was doing. Please please listen up- the days of med skipping have to be over or else you won't have a life to distract you from them.
It is possible to keep up with all aspects of college life while being compliant- choose carefully who you hang out with- be with the sporty people, train with friends and you're more likely to succeed.
Good luck x
Firstly, well done for making contact about this. CanI give you some urgent advice? What you are experiencingis a warning call from your body- it is not liking your lack of attention and believe me you are playing with fire.
I had a blissful, practically cf-free childhood and teen-hood. When social life kicked in around age 17 I started to notice things change. Fast forward 5 years to me in college and boy oh boy do I wish someone had sat me down and given me a good yelling.
You're blessed with good basal health- that is a gift that you HAVE to preserve because so easily, like without you even realising, it could be ripped from under you and you will wish with all your might you hadn't messed around.
If this sounds dramatic then, maybe it should. I just cannot over emphasise the need for you to take a new approach. Get exercising. Get doing ALL your meds. Look after your nutrition. Look after yourself. You have no choice here ok? The alternative is f***ing awful. I wa ssooo lucky to spring back from my rebellion and I actually shudder to think of the risks I took. I just didn't have a clue what I was doing. Please please listen up- the days of med skipping have to be over or else you won't have a life to distract you from them.
It is possible to keep up with all aspects of college life while being compliant- choose carefully who you hang out with- be with the sporty people, train with friends and you're more likely to succeed.
Good luck x