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Couging up blood

M

mom2lillian

New member
Julie

I hope this has stopped for you and Mark is better.

I have alot of bleeds and my doctor's process is streaks are fine but if it is more than a tablespoon you call in, if it does not stop within an hour or so then you go in or if the quantity is more than a tbsp. If you breathe shallow and suppress coughing and sit still it can help to stop in my experience. No breathing treatments or physiotherapy for 24 hours after bleeding stops (of course I have never had more than a few hours dont know about multiple days). My doctors also go by the belief that bleeding= irritation due to infection and thus automatically put you on IV's or at least cipro.

I believe i remember reading a post saying Mark has been sick lately so maybe it is time for IV's?
 
M

mom2lillian

New member
Julie

I hope this has stopped for you and Mark is better.

I have alot of bleeds and my doctor's process is streaks are fine but if it is more than a tablespoon you call in, if it does not stop within an hour or so then you go in or if the quantity is more than a tbsp. If you breathe shallow and suppress coughing and sit still it can help to stop in my experience. No breathing treatments or physiotherapy for 24 hours after bleeding stops (of course I have never had more than a few hours dont know about multiple days). My doctors also go by the belief that bleeding= irritation due to infection and thus automatically put you on IV's or at least cipro.

I believe i remember reading a post saying Mark has been sick lately so maybe it is time for IV's?
 
M

mom2lillian

New member
Julie

I hope this has stopped for you and Mark is better.

I have alot of bleeds and my doctor's process is streaks are fine but if it is more than a tablespoon you call in, if it does not stop within an hour or so then you go in or if the quantity is more than a tbsp. If you breathe shallow and suppress coughing and sit still it can help to stop in my experience. No breathing treatments or physiotherapy for 24 hours after bleeding stops (of course I have never had more than a few hours dont know about multiple days). My doctors also go by the belief that bleeding= irritation due to infection and thus automatically put you on IV's or at least cipro.

I believe i remember reading a post saying Mark has been sick lately so maybe it is time for IV's?
 
L

LouLou

New member
Julie, I'm sorry you all are dealing with hemoptysis. It is scary and one of the ugliest parts of cf I reckon. I have been dealing with it since I was 13 rarely ever going more than a couple months without the presence of blood. None of my doctors have ever felt that I needed an intervention like embolization or immediate IVs. My bleeds don't correspond with infection. In fact, the contrary has been questioned in my case that maybe I over 'clean' my lungs and strip them down and irritate them too much. You just can't win.

Here's my tidbit that hasn't already been said.
Keep a journal. A method I suggest is one of those little pocket size calendars. Come up with a rating system. For me I use this:
<H = streaking (not pure blood)
H = evidence of a bleed in the past but not fresh blood. Generally a session of pt clears any evidence.
H1-2 = 1-2 teaspoons of pure fresh, blood as a single episode
H3-4 = 3-4 teaspoons of pure fresh, blood as a single episode

Doing this will keep a record of how often and how much it really is happening. Sadly it's only human nature to block the memory of this and even a few days later he might not be able to remember, "was it Mon and Tue I saw blood or just Monday and Wed.?" Accurate records will help to analyze the problem.

Finally, don't freak out. He should remain calm and try to keep blood pressure down. This is the reason everyone is saying no weights. It puts pressure on the veins and right now you want no additional pressure on the veins.

He should try to work on figuring out his 'trigger' and avoid it. I can't do crunches and have to sleep propt or on my left side in order to not trigger my hemoptysis. There are also other triggers that others have already mentioned.

Vitamin K by prescription is called meptyon. He'll likely have to get on it. He should speak with a doctor but not be surprised if the doctor wants to wait and see. I'd have a 'major bleed action plan' in place. Know where to go and who to call at any time should he have a major bleed (defined as more than 1 cup in one episode). That is not the time to be showing up at the ER or fumbling around for phone numbers. It can be a life a or death situation, not so much because of the drowning in blood as it is loss of blood.

If you or he has any questions please don't hesitate to ask this hemoptysis expert <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
L

LouLou

New member
Julie, I'm sorry you all are dealing with hemoptysis. It is scary and one of the ugliest parts of cf I reckon. I have been dealing with it since I was 13 rarely ever going more than a couple months without the presence of blood. None of my doctors have ever felt that I needed an intervention like embolization or immediate IVs. My bleeds don't correspond with infection. In fact, the contrary has been questioned in my case that maybe I over 'clean' my lungs and strip them down and irritate them too much. You just can't win.

Here's my tidbit that hasn't already been said.
Keep a journal. A method I suggest is one of those little pocket size calendars. Come up with a rating system. For me I use this:
<H = streaking (not pure blood)
H = evidence of a bleed in the past but not fresh blood. Generally a session of pt clears any evidence.
H1-2 = 1-2 teaspoons of pure fresh, blood as a single episode
H3-4 = 3-4 teaspoons of pure fresh, blood as a single episode

Doing this will keep a record of how often and how much it really is happening. Sadly it's only human nature to block the memory of this and even a few days later he might not be able to remember, "was it Mon and Tue I saw blood or just Monday and Wed.?" Accurate records will help to analyze the problem.

Finally, don't freak out. He should remain calm and try to keep blood pressure down. This is the reason everyone is saying no weights. It puts pressure on the veins and right now you want no additional pressure on the veins.

He should try to work on figuring out his 'trigger' and avoid it. I can't do crunches and have to sleep propt or on my left side in order to not trigger my hemoptysis. There are also other triggers that others have already mentioned.

Vitamin K by prescription is called meptyon. He'll likely have to get on it. He should speak with a doctor but not be surprised if the doctor wants to wait and see. I'd have a 'major bleed action plan' in place. Know where to go and who to call at any time should he have a major bleed (defined as more than 1 cup in one episode). That is not the time to be showing up at the ER or fumbling around for phone numbers. It can be a life a or death situation, not so much because of the drowning in blood as it is loss of blood.

If you or he has any questions please don't hesitate to ask this hemoptysis expert <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
L

LouLou

New member
Julie, I'm sorry you all are dealing with hemoptysis. It is scary and one of the ugliest parts of cf I reckon. I have been dealing with it since I was 13 rarely ever going more than a couple months without the presence of blood. None of my doctors have ever felt that I needed an intervention like embolization or immediate IVs. My bleeds don't correspond with infection. In fact, the contrary has been questioned in my case that maybe I over 'clean' my lungs and strip them down and irritate them too much. You just can't win.

Here's my tidbit that hasn't already been said.
Keep a journal. A method I suggest is one of those little pocket size calendars. Come up with a rating system. For me I use this:
<H = streaking (not pure blood)
H = evidence of a bleed in the past but not fresh blood. Generally a session of pt clears any evidence.
H1-2 = 1-2 teaspoons of pure fresh, blood as a single episode
H3-4 = 3-4 teaspoons of pure fresh, blood as a single episode

Doing this will keep a record of how often and how much it really is happening. Sadly it's only human nature to block the memory of this and even a few days later he might not be able to remember, "was it Mon and Tue I saw blood or just Monday and Wed.?" Accurate records will help to analyze the problem.

Finally, don't freak out. He should remain calm and try to keep blood pressure down. This is the reason everyone is saying no weights. It puts pressure on the veins and right now you want no additional pressure on the veins.

He should try to work on figuring out his 'trigger' and avoid it. I can't do crunches and have to sleep propt or on my left side in order to not trigger my hemoptysis. There are also other triggers that others have already mentioned.

Vitamin K by prescription is called meptyon. He'll likely have to get on it. He should speak with a doctor but not be surprised if the doctor wants to wait and see. I'd have a 'major bleed action plan' in place. Know where to go and who to call at any time should he have a major bleed (defined as more than 1 cup in one episode). That is not the time to be showing up at the ER or fumbling around for phone numbers. It can be a life a or death situation, not so much because of the drowning in blood as it is loss of blood.

If you or he has any questions please don't hesitate to ask this hemoptysis expert <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
T

TwistedTanya

New member
I am so relieved to read everyone's experience and opinions on the bleeding b/c anytime I have coughed up pure blood and called my CF doctor and said it was about half a cup of fresh blood, they never seemed too concerned and said if it continued or was a cup or more to call back. Then one day while I was at my primary doctors, I started coughing up blood in the exam room while they were getting my vitals and when the doctor came in. he was VERY concerned and wanted me to go to the hospital and be monitered for a tleast 24 hours and maybe get a bronc. I was soooo confused about what to do b/c I had only been out of the hospital for 2 weeks and was feeling great and my primary doctor always seemed to care more about ME than my CF doctor ever did. I finally decided I'd go in since it would be for a short.......supposively. Of course it took till the 3rd day before they did the bronc. No hemotosis or bronchitus were found but I did have Asperillos. Still, it seems that none of the doctors would even tell me WHY I was coughing up the blood. I used to cough it up a few times a year over the last 6 years or so but the past few months it has been once or twice a week. I feel like I am talking to a freaken wall though b/c the doctors just look at me and never explain anything. They never really answer my questions. I am in the process of switching to some new doctors and have heard much better things about this other CF doctor so hopefully things will change. Reading these posts has really helped my stress and frustration though. I've found out so much more here than the doctors ever told me. I hate to hear of anyone coughing up blood but it does put me at ease to know I am not the only one.
Thanks
 
T

TwistedTanya

New member
I am so relieved to read everyone's experience and opinions on the bleeding b/c anytime I have coughed up pure blood and called my CF doctor and said it was about half a cup of fresh blood, they never seemed too concerned and said if it continued or was a cup or more to call back. Then one day while I was at my primary doctors, I started coughing up blood in the exam room while they were getting my vitals and when the doctor came in. he was VERY concerned and wanted me to go to the hospital and be monitered for a tleast 24 hours and maybe get a bronc. I was soooo confused about what to do b/c I had only been out of the hospital for 2 weeks and was feeling great and my primary doctor always seemed to care more about ME than my CF doctor ever did. I finally decided I'd go in since it would be for a short.......supposively. Of course it took till the 3rd day before they did the bronc. No hemotosis or bronchitus were found but I did have Asperillos. Still, it seems that none of the doctors would even tell me WHY I was coughing up the blood. I used to cough it up a few times a year over the last 6 years or so but the past few months it has been once or twice a week. I feel like I am talking to a freaken wall though b/c the doctors just look at me and never explain anything. They never really answer my questions. I am in the process of switching to some new doctors and have heard much better things about this other CF doctor so hopefully things will change. Reading these posts has really helped my stress and frustration though. I've found out so much more here than the doctors ever told me. I hate to hear of anyone coughing up blood but it does put me at ease to know I am not the only one.
Thanks
 
T

TwistedTanya

New member
I am so relieved to read everyone's experience and opinions on the bleeding b/c anytime I have coughed up pure blood and called my CF doctor and said it was about half a cup of fresh blood, they never seemed too concerned and said if it continued or was a cup or more to call back. Then one day while I was at my primary doctors, I started coughing up blood in the exam room while they were getting my vitals and when the doctor came in. he was VERY concerned and wanted me to go to the hospital and be monitered for a tleast 24 hours and maybe get a bronc. I was soooo confused about what to do b/c I had only been out of the hospital for 2 weeks and was feeling great and my primary doctor always seemed to care more about ME than my CF doctor ever did. I finally decided I'd go in since it would be for a short.......supposively. Of course it took till the 3rd day before they did the bronc. No hemotosis or bronchitus were found but I did have Asperillos. Still, it seems that none of the doctors would even tell me WHY I was coughing up the blood. I used to cough it up a few times a year over the last 6 years or so but the past few months it has been once or twice a week. I feel like I am talking to a freaken wall though b/c the doctors just look at me and never explain anything. They never really answer my questions. I am in the process of switching to some new doctors and have heard much better things about this other CF doctor so hopefully things will change. Reading these posts has really helped my stress and frustration though. I've found out so much more here than the doctors ever told me. I hate to hear of anyone coughing up blood but it does put me at ease to know I am not the only one.
Thanks
 
M

mom2lillian

New member
Tanya

I am so sorry you have to go through something so scarywithout any information. YOur docs definately suck, reading some stuff on here makes me realize how great mine are! At least for me bleeding is one of the scariest things that every happens to me so I feel for you.

I wanted to say that for me bleeding often happens right before I start getting sick but it also happens for no reason (apparently) whatsoever. My docs get worried-it sounds-easier than others but if more than 1-2tbsp I have to go to the hospital. The time to be really worried is if it is clots you are coughing up or like others said if you have alot. They worry because if it gets bad (which in my experienced happened very quickly) you can collapse a lung or loose too much blood too fast.

I think all the other advice posted is very good. Best of luck on your hunt with new docs and I hope you can get this resolved.

Nicole
 
M

mom2lillian

New member
Tanya

I am so sorry you have to go through something so scarywithout any information. YOur docs definately suck, reading some stuff on here makes me realize how great mine are! At least for me bleeding is one of the scariest things that every happens to me so I feel for you.

I wanted to say that for me bleeding often happens right before I start getting sick but it also happens for no reason (apparently) whatsoever. My docs get worried-it sounds-easier than others but if more than 1-2tbsp I have to go to the hospital. The time to be really worried is if it is clots you are coughing up or like others said if you have alot. They worry because if it gets bad (which in my experienced happened very quickly) you can collapse a lung or loose too much blood too fast.

I think all the other advice posted is very good. Best of luck on your hunt with new docs and I hope you can get this resolved.

Nicole
 
M

mom2lillian

New member
Tanya

I am so sorry you have to go through something so scarywithout any information. YOur docs definately suck, reading some stuff on here makes me realize how great mine are! At least for me bleeding is one of the scariest things that every happens to me so I feel for you.

I wanted to say that for me bleeding often happens right before I start getting sick but it also happens for no reason (apparently) whatsoever. My docs get worried-it sounds-easier than others but if more than 1-2tbsp I have to go to the hospital. The time to be really worried is if it is clots you are coughing up or like others said if you have alot. They worry because if it gets bad (which in my experienced happened very quickly) you can collapse a lung or loose too much blood too fast.

I think all the other advice posted is very good. Best of luck on your hunt with new docs and I hope you can get this resolved.

Nicole
 
A

AnD

New member
Usually if I have streaking or coughing up blood, it is right before my period<img src="">. My doctors have all said more than a tablespoon means come in and get checked out. <img src=""> .


How's he doing?
 
A

AnD

New member
Usually if I have streaking or coughing up blood, it is right before my period<img src="">. My doctors have all said more than a tablespoon means come in and get checked out. <img src=""> .


How's he doing?
 
A

AnD

New member
Usually if I have streaking or coughing up blood, it is right before my period<img src="">. My doctors have all said more than a tablespoon means come in and get checked out. <img src=""> .


How's he doing?
 
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