Hemoptysis + Tobra

[thelizardqueen]

So I'm having a hemoptysis episode right now. I'm not coughing up streaks, but rather like teaspoons. I've had hemoptysis in the past, but my question is, is should I be doing my TOBI with my episode? The reason I ask is because I've never had an episode while on inhaled meds, and I'm not sure if I should be doing them while having an episode. I'm about to do my next treatment in about half an hour, and I'm not sure whether to do it or not now, even physio I'm not sure whether I should do.

 

[S]

every time i've been on tobi and had blood come up my doc has had me stop the use of it.

 

[JazzysMom]

It varies from person to person, but basically it can be irritating to the lung & probably would be a good idea to stop it until the hemoptysis has gone bye bye. For me its usually the pulmoyzme that I m using, but Tobi can be pretty rough!

 

[anonymous]

I hate when I have hemptysis. In the past, 7 years ago before my last operation, which removed the remainer of my left lung I had many episodes of bleeding that required me to have 5 pulmonary embolizations. It was probably 4 years after the operation when I started to see some splats of bleeding again. These past 12 months I have had 1/2 to 1 teaspoon several times. I don't like it when it happens...but I try to remain calm and trust that it will pass. The odd thing is that it would always happen when I was feeling good. Go figure?

My doctor always says to not resume exercise, the vest or pulmozyme (I am not on Tobi) until 24 hours after the bleed.

I find when he puts me on Levaquin, 750 mg, for 3 weeks, that seems to really help too.

So take it easy for today and try to pamper yourself. Let us know how you are doing.

---------------------------------
Janet 47 CF

 

[JazzysMom]

Janet......I can relate to the feeling good & still having hemoptysis. Its quite annoying to be frank. Even tho my long history of it keeps me from going over the edge when I see red, it always sends a wave of anxiety. Who wants to see red when they cough stuff up!

 

[Jane]

Liz, I have nothing medically to offer, but I hope you are feeling better soon.

Jane

 

[NoExcuses]

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[Scarlett81]

Agree with Amy-don't stop TOBI. If anything that may help fight it if it's infection. I would call your doctor ASAP even if you get the answering service, have the doc on call, call you back.

 

[anonymous]

The few times I have had this, my doc does not want me to stop my treatments, unless it continues to happen. I usually have one episode of 1/4 cup or something and then done.

 

[Diane]

If i start having small hemoptysis episodes for days at a time thats when i START using the Tobi. It usually helps to clear up the extra infectious activity in my lungs and helps to curb the bleeding. Its hard with hemoptysis to know what the right thing to do is, because it is always a guessing game as to what the cuplrit is. If it is infection ,the Tobi might be of help. I would definitely curb the physio though, unless you do what i always do after a hemoptysis.... I do the vest with less pressure, and at a lighter speed. Good luck and let us know how you are doing with it.

 

[thelizardqueen]

Well I didn't do the Tobra last night, nor did I do physio. I was just too paranoid. I think its good that I didn't either, because it started up again during the night - just a couple of teaspoons. I've had an embolization in the past - 2 years ago, and ever since I get the occasional lung bleeder. Hemoptysis for me isnt' an indicator of infection. I get mine out of the blue. Every time I've gotten one I haven't gotten sick or anything. I think my viens are just so small and corroded from repeat infections (this is what the doc told me when I had my embolization), that they open easily when I cough. I just have very mild streaking today, but I did my physio and Tobra and haven't had a problem yet, but looks like I'm not going to work out today just in case. Thanks for all the advice guys. It was wierd though, because when I wasn't coughing, I was still getting that crackling kind of feeling that you get when you know the blood is moving around in your lungs and is ready to come up. I'll call my nurse on monday and see what she says, but I do have an appt with them on thursday.

 

[NoExcuses]

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