Coughing up blood related to Tobi?

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JennifersHope

New member
Hi....

I had my first experience today coughing up blood... What a treat......I don't want to go into to much detail cause I gross myself up..but this morning after my am treatments.. Albuteral.....vest.... Pulmozyme.... then tobi.... I coughed stuff up that I have never seen before.. Will leave it at a rainbow of colors..... and then a few minutes later I coughed up very bright red blood.. it only lasted a few minutes... but it scared the crumb buns out of me....

I have heard that Tobi can do that but have never had that happen before....

What do you guys think??? Has Tobi every done this before to you??? Also the rainbow that I coughed up cleared up as the day went on..now I am back to clear....

Thanks..

Jennifer
 
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anonymous

New member
Hi Jennifer,

Tobi is very irritating, so it's not surprising that it made you bleed. Yes, it is alarming the first time it happens. From my research & quesitoning of doctors, a little blood should not be a huge concern. BUT -- If the bleeding continues & the amount increases, then you should contact a doctor immediately.

I don't have much advice about how to better tolerate Tobi, other than drink A LOT of water (this makes a big difference) and take the Tobi in a well-ventilated area, so that mist doesn't hang around & you are breathing it in for hours.

all the best to you! I am 37 yo F w/ CF
 
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JazzysMom

New member
I was thinking about this after out chat. You might have moved a plug or loosened up an area that was really bad & sitting there awhile. The different colors would be the infection stages & the blood might just be from the jolt of ripping it away (did I gross you out yet). If it happens again. Drink Ice water, if it gets really bad dont lay flat & put an ice pack on your chest (the girls can handle it...lol). Do you take seperate Vitamin K? I would definitely mention it to the doctor & if it does start again or is really bad get ahold of them!
 
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thelizardqueen

New member
I hear ya about the scary feeling when you first cough up blood. I've never coughed up blood from Tobi before, but the first time I did cough up blood - it was scary - cups at a time.
 
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cfmama

New member
My daughter has experienced coughing up blood, I talked to the Dr. and she didn't seem really concerned due to the amount of times and the amount brought up. She also said that tobi is very irritating. Just wondering though and yes this is sick but has anyone ever coughed up something that would seriously remind you of a jelly fish but a little harder than one. I did not mention this to the Dr. but it really had us concerned, I didn't want them going searching for something. She has did this 3 different times but not consistant and they are different in sizes, the first time it was about the size of a fifty cent piece. Just wondering!
 
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anonymous

New member
I have also coughed up blood while on Pulmozyme. As a matter of fact my doctor had me go off Pulmozyme for a couple of weeks to get things calmed down (bleeding wise) before starting it up again.
 
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Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>JazzysMom</b></i><br>I was thinking about this after out chat. You might have moved a plug or loosened up an area that was really bad & sitting there awhile. <hr></blockquote>


I agree. Oddly for me, sometimes when I have had a bleed, i've felt better, like something had been cleared up. Weird I know, but true sometimes.
 
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Joblazer86

New member
i have been dealing with this for the past 2 yrs. so i have doing research on it. everyone is different so its not a solution to what ur going through but i have suggestions. well a bleed can be 2 things either a infection or a broken blood vessel. in ur case it sounds like ur fine b/c it stopped right after and it wasnt much from what u wrote. usually most ppl bleed from pulmozyme but of course u can also from tobi b/c it can irritate u. most cases its usually pulmozyme and then the vest can add to it. if u bleed again just skip the pulmozyme for a day and the vest. of course talk to ur doc b4 doing this but thats usually the first step if it gets worse. also u can try taking l-lysine it stops the bleeding quick and u can take a pretty high amount
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>cfmama</b></i><br>My daughter has experienced coughing up blood, I talked to the Dr. and she didn't seem really concerned due to the amount of times and the amount brought up. She also said that tobi is very irritating. Just wondering though and yes this is sick but has anyone ever coughed up something that would seriously remind you of a jelly fish but a little harder than one. I did not mention this to the Dr. but it really had us concerned, I didn't want them going searching for something. She has did this 3 different times but not consistant and they are different in sizes, the first time it was about the size of a fifty cent piece. Just wondering!<hr></blockquote>


I've coughed up something like that a couple of times. I told my doc's about it, and they said that it was a blood clot mixed with thick mucos - that it wasn't something I should be overly worried about.
 
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JazzysMom

New member
I have definitely had this. Sometimes its the crap sitting in the back of my throat & sometimes it comes from my chest. When it comes from my chest & can feeling it break loose. Its such a gratifying feeling. I never worried about it. I just consider it something that has been there awhile finally being able to come up & out. Think about how hard it is for the lungs to work with that hard junk sitting there.....ha ha you would want it out of your way if you were the lungs!!!!!!!!!!!!
 
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Emeraldmirror

New member
Since march i have been coughing up specks of blood or little streaks on a regular basis. I have also heard that tobi can really irritate it. The times that it gets really bad i'm off the tobi and just doing the regular ventolin and saline masks

Ashley 21 w/cf
 
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anonymous

New member
On the jellyfish issue: yes, this happens to me. I don't think it's cause for concern. It is just the same stuff that usually comes out, but a more dehydrated version. This usually happens to me when I travel to a drier climate (I live on the coast).

37 yo F w/ CF
 
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JennifersHope

New member
This topic is totally grossing me out.. and I am the one who started it HA HA...... I can relate to everything you guys said but can't bring myself to go into details....Phlegm is the one thing that grosses me out the most... Even as a nurse, I can handel anything.. and I mean anything.. but give me a patient that coughs something up.. and I am gagging....

Last night I had another little bleeding episode not real bad.... but I woke up choking.... it scared me.... even though it was only a little bit...nothing happend yet today...but every time I cough or clear my throat.. I get a feeling of anxiousness....and I am constantly looking to see if I see anything...

I guess I will mention this to my doctor next time.. I do hope it is the meds and not my lungs getting worse....


Jennifer
 
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JazzysMom

New member
Jen, The way u are ABOUT mucuous is the TOTAL opposite of my therapists feelings at the hospital/clinic. I think it is hilarious when they got SOOOOOOOO excited at someone getting up a glob (feel free to get sick here) that they could feel moving, but just wouldnt come up!
 
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anonymous

New member
I am not currently on TOBI, but have been in the past.
I started taking it when it first became available and coughed up junk with specks of blood after taking it about a week each and every month I was supposed to take it. I always had a problem with it because I just didn't think I should be coughing up blood. The doctors never seemed to mind. Each month it got progressively worse until finally after taking TOBI for a while I coughed up pure blood. Everytime I was coughing up any specks of blood or anything I told my doc, when I coughed up pure blood I told my doc and he said to stop taking it, so I stopped. I did not take it for a few years then the doc said lets just try it again and see how you do with it. Took it for a month about 6 months ago and had no problems. They have since had me stop taking it because my cultures are free of Psuedomonus at the current time.
I would just talk to your doctor about it if you are worried about it. One thing that I did find that helped when I was taking the TOBI the first time when I had the problems with coughing up blood. It sometimes helped to take the pulmozyme/albuterol AFTER I had done the TOBI. I know the Albuterol opens you up for the other meds, but taking it between the TOBI and pulmozyme sometimes helped alleviate some problems for me.

Lindsey
23 w/CF and CFRD
 
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JennifersHope

New member
Okay now this really doesn't make any sense.... I did my vest and treatments hours ago... and well I just had another bleeding episode.. not a whole lot but a little more then last time... Could stress provoke it?? I was crying a little bit tonight.. I have a dear friend who is real sick he has CF and recently cultured Cepacia and has gotten to the point where he is on bi pap he is in the hospital and their are no words to express how dear he is to me.. so of course I have been really upset for a few hours now kind of crying on and off and all of a sudden I coughed and bleed.... COuld that be related to stress or am I just plain nuts????
 
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littledebbie

New member
My experience has been that once you have a bleeding episode it is more likely to reoccur a few times for a few days. It's like you have a cut in a bad place like in between your fingers, you have to use your lungs so they don't get a lot of healing time and you cough so they stay a little irritated they don't get to "Scab" so to say. As long as you are not bleeding cups at a time continually and it slows then stops and then streaks and then streaks brown (dried blood is a good sign, means it's stopping)I think you are good. Again it's a personal thing. I had an experience where my lungs bled 2 or three times in one year and then it didn't happen again for about 2 or 3 years. Fun, fun, fun.
Side note-Nuts, our bodies are nuts, not us, let's not get confused on that issue!
Good luck to both you and your friend, I hope you are both on the mend soon.
 
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