needing advice

[Scarlett81]

So I had my first hemoptysis episode the other week, which you were there for. And its cleared up for the most part. But here's the thing. The doc said it was probably sign of infection. I'm on IVs now. I was at the doc's yesterday. I have no lung infection-at least nothing out of the ordinary.

The only thing that's different in the past month is starting the Hypertonic Saline. I strongly suspect that that's it. Can it really be a coincidence that I never bleed my whole life and then a week after I start this I bleed? Even though its a little, the doc seems concerned with it. But I really don't want to be admitted again.

What would you do? Would you stop the saline even though it may have other great benefits as the research is saying-or is it worth it to you to stay on it? (obviously I would consult my doctor before doing anything, I'm just still in the thinking phase) I don't know what to do. It seems like some feel that a little bleeding is no big deal. But the doctor is acting like its a big deal-she's very strict with it.

 

[JazzysMom]

It could very well be the saline. I had a bit of hemoptysis when I first started using it, but I have a long history of hemoptysis. Mine subsided after a few weeks. She probably is more concerned with yours because you are just getting stabilized. Maybe you could decrease the % you use.....thats assuming you are on 7%, but its a thought. If you feel that the saline is of benefit & dont want to totally give it up, but want to experiment to see if it might be contributing to the bleeding then I would think this is a way to do so. Hope you get some answers!

 

[Scarlett81]

ok this is sneaky, but do you always tell your doc about every single episode of hemoptysis? B/c I mean these are teeny tiny streaks. And yes-they concern me alot-but I just don't want to be admitted and lay there for days when I think this is probably the saline.

 

[kybert]

tiny streaks arent really anything to worry about. you wont get admitted over it i can assure you. i wouldnt stop the hypertonic, just reduce the percentage. try 5% instead. i honestly think 7% is way too high. most people just cant handle it. if 5% is still too irritating, try 4%.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

So I had my first hemoptysis episode the other week, which you were there for. And its cleared up for the most part. But here's the thing. The doc said it was probably sign of infection. I'm on IVs now. I was at the doc's yesterday. I have no lung infection-at least nothing out of the ordinary.



The only thing that's different in the past month is starting the Hypertonic Saline. I strongly suspect that that's it. Can it really be a coincidence that I never bleed my whole life and then a week after I start this I bleed? Even though its a little, the doc seems concerned with it. But I really don't want to be admitted again.



What would you do? Would you stop the saline even though it may have other great benefits as the research is saying-or is it worth it to you to stay on it? (obviously I would consult my doctor before doing anything, I'm just still in the thinking phase) I don't know what to do. It seems like some feel that a little bleeding is no big deal. But the doctor is acting like its a big deal-she's very strict with it.</end quote></div>


I'll start with the fact that every CF body is different. So what works with one CFer may not work with another.

For me, hemoptasis is always a sign of an infection. I've only had it on and off for about a year. And I usd to throw fits when my doc would put me on antibiotics even though I was feeling fine. But for me, in my case, he turned out to be right. It's always a sign of infection.

I know some people get hemoptasis with Pulmozyme. Never heard of it with Hypertonic Salene, but I wouldn't be surprises.

And on occasion, just coughing can make you bleed. It's not always an infection.

Being agressive with antibiotics is the European school of thought. In some Scandanavian countries (anyone here from Norway, Sweden, Denmark?) your'e in the hospital at least 2 times a year with IV's regardless of how you're doing. Apparently, the clinical outcomes are realy good. Some docs are adopting a more agressive stance with antibiotics now in the US.

Since you have cepacia, I can imagine this weighs on your doc's mind as well. I have little experience with it, but I can imagine that your doc would want to be extra cautious about any bleeders.

Keep us posted!

 

[miesl]

<div class="FTQUOTE"><begin quote>B/c I mean these are teeny tiny streaks</end quote></div>
Are you coughing more frequently and with more force than you used to?

 

[Scarlett81]

I'm not coughing more frequently-in fact it's decreased if anything. This is what has me boggled.

The only thing I notice that's different is while I do my Physio-specifically during Hypertonic saline, I cough very hard and deep. A few times I've been like whoa-I felt a pop. That's why I suspect the saline.

This is why I need the perspective of all of you. This is new to me. And I've never bled. To be honest I've had moments of such frustration I've thought-am I beginning heading downhill? I'm getting very negative.

 

[anonymous]

I had the first experience with bleeding at about 18-20, I can´t remember exactly. In my opinion everyone with cf will have that sooner or later...

Uli,43,Germany

 

[LouLou]

I have been dealing with hemoptysis since I had my first bit of blood come up when I was 13. I've never had an embolyzation and have never coughed up more than 2 Tbsp. I find I get it around the time that in other areas of my body shedding of membrane layers is occuring (ie. my period). Many woman report this also. For me hemoptysis is not necessarily a sign of infection and I would have to disagree if my doctor wanted to admit me whenever I got it (btw- I haven't been on IV's since '00). That's just my 2 cents for what it's worth.

Oh and for me coughing up blood is similar to a bloody nose in that you know how when you get a bloody nose the likelihood of having another one within a short duration of time is not uncommon. I feel there is a healing time that is required or I will likely be dealing with it on a daily basis (streaking). Things that trigger it for me are having a high heartrate and then getting in a horizontal position. An example, is get up and do something fast like turn off my alarm, go to the bathroom, and then hop in bed to snuggle Jared one last time before getting up for the day ...all in say 60 sec. I just can't do this if I've recently had hemoptysis because I can count on a bleed for sure. Also, situps in rapid succession will trigger it. So yep I probably can't birth on my back and am going to have to go somewhere that will allow a none back birth should I carry a pregnancy to term.

Do you find you only get hemoptysis in certain positions or situations? It can be diet related as well. Some get it after big binges on sugar.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

ok this is sneaky, but do you always tell your doc about every single episode of hemoptysis? B/c I mean these are teeny tiny streaks. And yes-they concern me alot-but I just don't want to be admitted and lay there for days when I think this is probably the saline.</end quote></div>


LOL IF Dr. Walker knew how many times or how much overall I have bled over the years & didnt tell her she would hang me. Once I realized that I am prone to hemoptysis I took better notice of my diet, physical activities etc that might trigger it especially if I knew there was no infection!

 

[LouLou]

but Melissa - do you call her every time you get it?

 

[JazzysMom]

No I do not call her. I will mention it at doctors appointments if it had happened within the 4 weeks prior.

 

[anonymous]

I've read that you should only take the hypertonic saline if your pfts are above 40%. Don't know what yours are, but maybe that has something to do with it.

 

[HairGirl]

I have major hemoptysis problems actually last weekend! about a 1/2
c. Anyways, I was doing hypertonic everyday and pulmicort twice a
day. So I cut back, try doing the hypertonic every other day or
something! Also some bleeds do start because we cough so hard and a
lot. One of my CF dr's told me that it's common in cf to bleed
because our bronchial arteries don't grow as big as they should so
infection and just plain hard coughing can cause a bleed! Hope you
don't have any more episodes!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

It sometimes worries me that my bleeds are always major when I have them, and that they are not from coughing hard at all. I will be sitting watching tv - cough once, and be coughing up blood. I was told when I got my embolization two years ago that the vein they fixed looked "corroded", like acid got at it. I wonder if that's the case for most of my veins? I've only had this problem for the last two years - never had anything like it before that.

 

[AttyMom]

My one episode of hemoptysis totally came out of the blue while I was having a conversation with my husband before bed. I hadn't been feeling sick or anything out of the ordinary.

My suggestion would be for you to mention the streaking to your doctor. If you're on the IV's the streaking will likely clear up soon, but it's probably best to mention it since it doesn't seem common for you.

 

[Scarlett81]

To answer some questions,

About the Hypertonic saline, my PFT's are 62% right now. as of yesterday. So, I assume I qualify for it.

not to change the subject-but my PFts yesterday were 62%, as I said. 3 weeks ago they were 61%. But, I've been on IVs for a week! They didn't even move. ok, 1%-who cares. The only weird thing I can think of it when I did them yesterday, it felt like it was very hard to do them, and it made my chest hurt. I never get that. The really weird thing is, 1 1/2 months ago, they were like 74%, higher than they've been in 8 yrs. So what happened?!!!

And as far as when I notice the blood, it's usually first thing in the morning. My first spit after waking up is bloody, and my morning physio is streaky. Then always by 11:00 -at the latest- its gone.

 

[Scarlett81]

A few of you mentioned that diet influenced the hemoptysis-

What foods did you figure out you had to avoid or eat and do you know why thoses foods made it happen?

Thanks.