Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.
My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.
Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).
I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.
It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.
My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.
Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).
I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.
It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.