coughing up blood?

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rosie8

New member
OKAY SO I AM LOSING PATIENCE.


nineteen, female, diagnosed at 3.


the internet sucks. and does no good. so is anyone on Cayston? i was having bad reactions to Tobi, so my dr put me on Cayston. anyway, i have been coughing like CARAZY today. tightened chest and everything, and i have even been coughing up blood =o is this a reaction to Cayston ? i dont know if i should go to the doctor or what. is it something to be concerned about? or is it the norm for CF? it would be greatly appreciated if someone would answer me! ASAP<img src="i/expressions/coughing.gif" border="0">
 
R

rosie8

New member
OKAY SO I AM LOSING PATIENCE.


nineteen, female, diagnosed at 3.


the internet sucks. and does no good. so is anyone on Cayston? i was having bad reactions to Tobi, so my dr put me on Cayston. anyway, i have been coughing like CARAZY today. tightened chest and everything, and i have even been coughing up blood =o is this a reaction to Cayston ? i dont know if i should go to the doctor or what. is it something to be concerned about? or is it the norm for CF? it would be greatly appreciated if someone would answer me! ASAP<img src="i/expressions/coughing.gif" border="0">
 
R

rosie8

New member
OKAY SO I AM LOSING PATIENCE.
<br />
<br />
<br />nineteen, female, diagnosed at 3.
<br />
<br />
<br />the internet sucks. and does no good. so is anyone on Cayston? i was having bad reactions to Tobi, so my dr put me on Cayston. anyway, i have been coughing like CARAZY today. tightened chest and everything, and i have even been coughing up blood =o is this a reaction to Cayston ? i dont know if i should go to the doctor or what. is it something to be concerned about? or is it the norm for CF? it would be greatly appreciated if someone would answer me! ASAP<img src="i/expressions/coughing.gif" border="0">
 
H

hmw

New member
It's only been a few minutes since you posted and it's very late... only a few people are logged on- you may not get many replies till morning, not because people don't care, but because most active site members won't see this till then. I truly hope you can get the support you need, I can tell how worried you are right now and I'm sorry you are going through this. <img src="i/expressions/rose.gif" border="0">

We have no Cayston experience here. However, especially if coughing up blood is something new for you, I would want to call and talk to your dr about it and find out what they want you to do. It's not necessarily an uncommon thing in CF, but amount makes a big difference- is it some streaks, a spoonful, half a cup? Is it happening over and over?
 
H

hmw

New member
It's only been a few minutes since you posted and it's very late... only a few people are logged on- you may not get many replies till morning, not because people don't care, but because most active site members won't see this till then. I truly hope you can get the support you need, I can tell how worried you are right now and I'm sorry you are going through this. <img src="i/expressions/rose.gif" border="0">

We have no Cayston experience here. However, especially if coughing up blood is something new for you, I would want to call and talk to your dr about it and find out what they want you to do. It's not necessarily an uncommon thing in CF, but amount makes a big difference- is it some streaks, a spoonful, half a cup? Is it happening over and over?
 
H

hmw

New member
It's only been a few minutes since you posted and it's very late... only a few people are logged on- you may not get many replies till morning, not because people don't care, but because most active site members won't see this till then. I truly hope you can get the support you need, I can tell how worried you are right now and I'm sorry you are going through this. <img src="i/expressions/rose.gif" border="0">
<br />
<br />We have no Cayston experience here. However, especially if coughing up blood is something new for you, I would want to call and talk to your dr about it and find out what they want you to do. It's not necessarily an uncommon thing in CF, but amount makes a big difference- is it some streaks, a spoonful, half a cup? Is it happening over and over?
 
R

robert321

New member
I'm not on cayston either but it isn't uncommon for a person with cf to have hemoptysis, or to cough up blood.
How long have you been on the cayston? I would definately say it's worth a call to the dr office, especially if you've never done it before.
 
R

robert321

New member
I'm not on cayston either but it isn't uncommon for a person with cf to have hemoptysis, or to cough up blood.
How long have you been on the cayston? I would definately say it's worth a call to the dr office, especially if you've never done it before.
 
R

robert321

New member
I'm not on cayston either but it isn't uncommon for a person with cf to have hemoptysis, or to cough up blood.
<br />How long have you been on the cayston? I would definately say it's worth a call to the dr office, especially if you've never done it before.
 
W

windex125

Guest
I started my Cayston a week ago well today is day 7 I have been experiencing very dry hacking cough, as a matter fact the minute I put the nebulizer in my mouth I start dry hacking. This lasts a few second, and I continue.I am also experiencing very loose BM's but I think this is also related to the new drug. I've had these symptoms before when using IV meds.I will give it a full 2 weeks. I have a IV port in my left shoulder for when I have to use IV meds. But we are as well giving Cayston a try over using the IV's this time. I have coughed blood many times mixed with the junk I bring up so that is streaking.It's not all the time. I've also had pure blood and it was for extened amount of time and had to go on vitamin K shots for clotting it subsided. You do sound panicked, and fustrated. Please try to calm down, we all know how fustrating this is, the constant care. Will my words comfort you not sure? but know that their are alot of young adults on here like yrself and they are very active in posting. If the blood is constant and like Harriet posted more than a certain amt. call the doctor, that is important. If you like you can PM me and I will talk more. Have a better day today/ Pat-55/CF
 
W

windex125

Guest
I started my Cayston a week ago well today is day 7 I have been experiencing very dry hacking cough, as a matter fact the minute I put the nebulizer in my mouth I start dry hacking. This lasts a few second, and I continue.I am also experiencing very loose BM's but I think this is also related to the new drug. I've had these symptoms before when using IV meds.I will give it a full 2 weeks. I have a IV port in my left shoulder for when I have to use IV meds. But we are as well giving Cayston a try over using the IV's this time. I have coughed blood many times mixed with the junk I bring up so that is streaking.It's not all the time. I've also had pure blood and it was for extened amount of time and had to go on vitamin K shots for clotting it subsided. You do sound panicked, and fustrated. Please try to calm down, we all know how fustrating this is, the constant care. Will my words comfort you not sure? but know that their are alot of young adults on here like yrself and they are very active in posting. If the blood is constant and like Harriet posted more than a certain amt. call the doctor, that is important. If you like you can PM me and I will talk more. Have a better day today/ Pat-55/CF
 
W

windex125

Guest
I started my Cayston a week ago well today is day 7 I have been experiencing very dry hacking cough, as a matter fact the minute I put the nebulizer in my mouth I start dry hacking. This lasts a few second, and I continue.I am also experiencing very loose BM's but I think this is also related to the new drug. I've had these symptoms before when using IV meds.I will give it a full 2 weeks. I have a IV port in my left shoulder for when I have to use IV meds. But we are as well giving Cayston a try over using the IV's this time. I have coughed blood many times mixed with the junk I bring up so that is streaking.It's not all the time. I've also had pure blood and it was for extened amount of time and had to go on vitamin K shots for clotting it subsided. You do sound panicked, and fustrated. Please try to calm down, we all know how fustrating this is, the constant care. Will my words comfort you not sure? but know that their are alot of young adults on here like yrself and they are very active in posting. If the blood is constant and like Harriet posted more than a certain amt. call the doctor, that is important. If you like you can PM me and I will talk more. Have a better day today/ Pat-55/CF
 
M

momofcfprincess

New member
MY DD 11 years old coughed up blood about a month ago. I called her doctor and she said this was common and asked how much I told her it was about a couple of teaspoons and she said as long as it was not like a "cupfull". My daughter was sick at the time with a 'Flare up" she was also on Cayston at the time. She has been on Cayston for 8 months with NO side affects. I wish you well, I KNOW how frustrating CF is.
 
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momofcfprincess

New member
MY DD 11 years old coughed up blood about a month ago. I called her doctor and she said this was common and asked how much I told her it was about a couple of teaspoons and she said as long as it was not like a "cupfull". My daughter was sick at the time with a 'Flare up" she was also on Cayston at the time. She has been on Cayston for 8 months with NO side affects. I wish you well, I KNOW how frustrating CF is.
 
M

momofcfprincess

New member
MY DD 11 years old coughed up blood about a month ago. I called her doctor and she said this was common and asked how much I told her it was about a couple of teaspoons and she said as long as it was not like a "cupfull". My daughter was sick at the time with a 'Flare up" she was also on Cayston at the time. She has been on Cayston for 8 months with NO side affects. I wish you well, I KNOW how frustrating CF is.
 
J

Jane

Digital opinion leader
My son has coughed up blood in the past and while terribly unnerving, you do get used to it. Our doc also said a little blood is pretty normal now and then. If it happens several times a day or if it is a larger quantity, you should check with you doc.

BTW- we kept track and realized Josh always coughs up blood with TOBI, usually after the third day.
 
J

Jane

Digital opinion leader
My son has coughed up blood in the past and while terribly unnerving, you do get used to it. Our doc also said a little blood is pretty normal now and then. If it happens several times a day or if it is a larger quantity, you should check with you doc.

BTW- we kept track and realized Josh always coughs up blood with TOBI, usually after the third day.
 
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