Ok so as some may remember, i've battled hemoptysis for a while now. Got tested for the MAC bacterium, turned up nothing. Had a CT scan with contrast, turned up nothing. All major possibilities turned up nothing. Took recommended supplements to help combat it, and I still have occasional bouts.
During all this while posting about my bleeds, I have had a few of you recommend I stop nebbing my pulmozyme, because it can cause bleeds, and that is well documented (I looked it up myself as well). Well last night (I have always just done one dose at night before bed) I didn't do my dose, and plan on not doing it for a month to see if my streaks/bleeds stop. My violent massive bleeds haven't happened since I did my antibiotic IV's a little while back, but I still get streaks/splotches occasionally when I do my vest treatment, following my nebs.
Before I decided to stop my pulmozyme, I brought this up with my doc, and after some hesitation, he said try the month off of it and see what happens. I know the stuff thins the mucous by cleaving the RNA strands, and the literature with the medication says "DO NOT MISS A DOSE!". All of this just makes me a tad anxiety ridden to go off of it. I woke up this morning and felt (atleast I perceived it this way, who knows, could all be in my head due to the anxiety of getting off of it) a little more constricted chest wise.
After my dose of albuterol and my first vest setting, I coughed up some blood tinged stuff again, though nothing real strong. What if pulmozyme isn't the culprit? What if it's the hypertonic (though I have had bleeds way before the hypertonic, and have been on pulmozyme since it had come out)?
Anyways, if anyone has also had to quit the pulmozyme due to similar reasons (or maybe other reasons like not being able to afford it, whatever) for a period of time, please chime in and let me know how you felt/how it went, etc etc. Quitting (even for just a month) something that I have been told and made aware just how important it is for me, really kind of bugs me out.
Also another thing. I understand medications can take a while to work/sink in...If I'm off it for a week or two, and my bleeds continue like before, if I go back on it, i'm sure it will take a while for the action of the medication to get back to it's previous state of constant activity within my lungs. Just thoughts I know.
Other than all this, I feel pretty good. Still hitting the weights like a fiend (benching 250 lbs @ 3 sets of 10, and curling 90 lbs @ 3 sets of 10), eating great, having much better BM's etc etc. I guess time will tell what happened, and I hope I don't mess myself up for doing this, but I want to know your guys experiences please, if anyone has any.
During all this while posting about my bleeds, I have had a few of you recommend I stop nebbing my pulmozyme, because it can cause bleeds, and that is well documented (I looked it up myself as well). Well last night (I have always just done one dose at night before bed) I didn't do my dose, and plan on not doing it for a month to see if my streaks/bleeds stop. My violent massive bleeds haven't happened since I did my antibiotic IV's a little while back, but I still get streaks/splotches occasionally when I do my vest treatment, following my nebs.
Before I decided to stop my pulmozyme, I brought this up with my doc, and after some hesitation, he said try the month off of it and see what happens. I know the stuff thins the mucous by cleaving the RNA strands, and the literature with the medication says "DO NOT MISS A DOSE!". All of this just makes me a tad anxiety ridden to go off of it. I woke up this morning and felt (atleast I perceived it this way, who knows, could all be in my head due to the anxiety of getting off of it) a little more constricted chest wise.
After my dose of albuterol and my first vest setting, I coughed up some blood tinged stuff again, though nothing real strong. What if pulmozyme isn't the culprit? What if it's the hypertonic (though I have had bleeds way before the hypertonic, and have been on pulmozyme since it had come out)?
Anyways, if anyone has also had to quit the pulmozyme due to similar reasons (or maybe other reasons like not being able to afford it, whatever) for a period of time, please chime in and let me know how you felt/how it went, etc etc. Quitting (even for just a month) something that I have been told and made aware just how important it is for me, really kind of bugs me out.
Also another thing. I understand medications can take a while to work/sink in...If I'm off it for a week or two, and my bleeds continue like before, if I go back on it, i'm sure it will take a while for the action of the medication to get back to it's previous state of constant activity within my lungs. Just thoughts I know.
Other than all this, I feel pretty good. Still hitting the weights like a fiend (benching 250 lbs @ 3 sets of 10, and curling 90 lbs @ 3 sets of 10), eating great, having much better BM's etc etc. I guess time will tell what happened, and I hope I don't mess myself up for doing this, but I want to know your guys experiences please, if anyone has any.