Well here goes...(some know the history, some don't so ill just go over it quickly)
I have always been a bleeder. Generally speaking, back in the day, i'd have one real bleed (couple of tablespoons of pure red blood from apparently the lungs). When it got worse (mostly more often than the normal once every month or two) I would wait a bit till it was obvious it was worse/getting worse then treat it like an infection and go the IV route etc.
Well a month or two ago it got very bad, and I did 2 weeks of oral and IV antibiotics. After that I of course felt better, but during the treatments I had one bleed, and a couple streaks of blood in the sputum following nebs/vest treatment. After fighting with the doc and using some peoples advice tactics from here, I was able to get a CT scan with contrast from the doc. I also gave 3 or 4 sputum cultures over a weekend (kept them in the fridge) to check for MAC bacterium (his other suspicion). Before the CT scan was ordered, he looked at new x-rays and said it looked like I had a cavity on my right lower lobe of my lung (freaked me out at the time).
He said he didn't see anything on the CT scan that was unusual, and especially so anything that would/should be causing my bleeds. The MAC tests also came back negative. After asking you guys, and talking to him, I thought I would troubleshoot the pulmozyme because several on here have said it caused their bleeds, and doing some searching on the net, there were actual trial results showing that pulmozyme in some people had a marked increase in frequency and severity of bleeds.
So I figured, i've tried everything else, why not this? So I stopped doing my pulmozyme once a day (at night at the end of my vest treatment). I believe tonight would have been exactly one week. During the week off, I had one instance of blood streaked mucous. I have generally been feeling good, but it seems as though my mucous is less thin (not necessarily thicker, but just doesn't move as fluid as what I used to cough up). I figured well if quitting the pulmo stops my bleeds in general (it's always expected to eventually get one again, some time down the road for the most part), or at the least greatly reduces their severity/frequency, and I have to deal with thicker stuff, i'll deal with it.
Tonight I sat down with my neb stuff/meds, hooked up the vest, and before I could even start, I went to cough, and boom. Pure blood again. Probably about 2-3 tablespoons of pure blood (about 5 or 6 cough ups). What was weird this time (several things), is that I wasn't doing any of the things that used to be a general precursor to the bleeds. Sexual excitement/activity, bursts of exertion (which I assume was due to elevation of blood pressure, which is now almost always very low), or laying down in bed. Also, I didn't get that all too familiar sensation of a tickling/fluid all of a sudden in my lungs like I used to. This was the first time a bleed showed zero signs before it happened.
After the CT scan and the MAC results came back negative, my doc ordered a sinus CT scan. For some reason he seems to think (since the other culprits came back negative) that my sinuses might be causing the bleeds...Like, they are coming from my sinuses and just draining into my lungs or something. That CT scan (which was supposed to take place this week) was refused by my insurance, so I will have to look deeper into it come monday (their big cf clinic is on fri, and my week was busy anyways).
For about two weeks now I have been very vigilant with douching my sinuses properly twice a day, and they feel much better in general (sometimes amazingly so). I take logical supplements/vitamins/minerals etc. I generally eat well, and I work out religiously 3 times a week with weights, and walk/bike a ton at work. I also of course do my vest religiously twice a day, with all my nebs.
I have very weak (according to my doc) strains of pseudo and staph, and also have serratia. That is it bug wise. I don't want to live on sporadic antibiotics every month for obvious reasons. This situation is quite literally pissing me off to new levels, and im being dragged down mentally. I feel my desire to fight slowly being eroded away, and as we all know, that is a very bad thing.
It's not like i'm a chain smoker and don't do any of my mebs/nebs/therapy. For the most part, I do everything right and then a ton more. I've tried everything the doc and you guys have suggested, and i'm still having this problem. So far no tests have shown *****. I doubt it's the hypertonic saline because I had bleeds before the hypertonic.
While I am still very healthy, and nowhere near as bad off as others with CF, this problem has really thrown a monkey wrench in my quality of life. Limitations (and general apprehensivness awareness wise of certain activities) sexually, activity, etc...It's driving me nuts. Especially so because before, there was always a solution that took care (for the most part) of whatever problem I was experiencing. I'm very tenacious and far from a roll over and die type person. But I am at my wits end. Do I go back on pulmozyme now, knowing that I still bleed while off it? Do I quit hypertonic for a week or two to see if I bleed while still off that? If I report this back to my doc come say monday, what might he recommend? If he recommends more antibiotics, do I go on them?
Currently my left arms vein has some form of stoppage in it, that when she was attempting to give me my first midline for this last round of IV's, she couldnt put it in my left arm due to the blockage, and had to put it in my right arm. So technically, i'm now down to only having one good arm for midlines. I seriously SERIOUSLY don't want to get some kind of port, because before all this BS started, I wasn't sick enough (as often) to warrant a port. Plus a port brings forth other worries/possible problems.
What was odd about this bleed, is that it didn't feel the same afterwards like the others do. Usually after a strong bleed, my lungs feel inflamed. This time, nothing. Of course it only hightens my paranoia that today I did some oregano oil under the tongue for the first time since I stopped the pulmozyme. I do vitamin K now, but i'm wondering if I could/should ask my doc for a perscription strength form of vit K??? After I got my flu shot, the nurse commented "Oh your a bleeder...". Sure didn't want to hear that just from a shot.
If all of this is the true begining of the end for me...I will tell you right now I refuse to slowly be eroded away to the point where I have a shadow of my previous quality of life/pursuit of my interests. I will say my goodbyes to my family, and take a trip to somewhere beautiful like yellowstone national park, go sit on the side of a beautiful cliff (probably while coughing up blood), watch the sunset, and then blow my brains out.
Do you guys think there is any point in say going to north florida to some of our well known CF centers and seeing if anyone else can help me, or no? Should I go back onto pulmo and atleast get some of the benefit back while I continue to bleed? I'm nearly out of troubleshooting (if not already out of them) ideas...Some suggestions would really be welcome before I lose all hope and travel to Yellowstone.
I have always been a bleeder. Generally speaking, back in the day, i'd have one real bleed (couple of tablespoons of pure red blood from apparently the lungs). When it got worse (mostly more often than the normal once every month or two) I would wait a bit till it was obvious it was worse/getting worse then treat it like an infection and go the IV route etc.
Well a month or two ago it got very bad, and I did 2 weeks of oral and IV antibiotics. After that I of course felt better, but during the treatments I had one bleed, and a couple streaks of blood in the sputum following nebs/vest treatment. After fighting with the doc and using some peoples advice tactics from here, I was able to get a CT scan with contrast from the doc. I also gave 3 or 4 sputum cultures over a weekend (kept them in the fridge) to check for MAC bacterium (his other suspicion). Before the CT scan was ordered, he looked at new x-rays and said it looked like I had a cavity on my right lower lobe of my lung (freaked me out at the time).
He said he didn't see anything on the CT scan that was unusual, and especially so anything that would/should be causing my bleeds. The MAC tests also came back negative. After asking you guys, and talking to him, I thought I would troubleshoot the pulmozyme because several on here have said it caused their bleeds, and doing some searching on the net, there were actual trial results showing that pulmozyme in some people had a marked increase in frequency and severity of bleeds.
So I figured, i've tried everything else, why not this? So I stopped doing my pulmozyme once a day (at night at the end of my vest treatment). I believe tonight would have been exactly one week. During the week off, I had one instance of blood streaked mucous. I have generally been feeling good, but it seems as though my mucous is less thin (not necessarily thicker, but just doesn't move as fluid as what I used to cough up). I figured well if quitting the pulmo stops my bleeds in general (it's always expected to eventually get one again, some time down the road for the most part), or at the least greatly reduces their severity/frequency, and I have to deal with thicker stuff, i'll deal with it.
Tonight I sat down with my neb stuff/meds, hooked up the vest, and before I could even start, I went to cough, and boom. Pure blood again. Probably about 2-3 tablespoons of pure blood (about 5 or 6 cough ups). What was weird this time (several things), is that I wasn't doing any of the things that used to be a general precursor to the bleeds. Sexual excitement/activity, bursts of exertion (which I assume was due to elevation of blood pressure, which is now almost always very low), or laying down in bed. Also, I didn't get that all too familiar sensation of a tickling/fluid all of a sudden in my lungs like I used to. This was the first time a bleed showed zero signs before it happened.
After the CT scan and the MAC results came back negative, my doc ordered a sinus CT scan. For some reason he seems to think (since the other culprits came back negative) that my sinuses might be causing the bleeds...Like, they are coming from my sinuses and just draining into my lungs or something. That CT scan (which was supposed to take place this week) was refused by my insurance, so I will have to look deeper into it come monday (their big cf clinic is on fri, and my week was busy anyways).
For about two weeks now I have been very vigilant with douching my sinuses properly twice a day, and they feel much better in general (sometimes amazingly so). I take logical supplements/vitamins/minerals etc. I generally eat well, and I work out religiously 3 times a week with weights, and walk/bike a ton at work. I also of course do my vest religiously twice a day, with all my nebs.
I have very weak (according to my doc) strains of pseudo and staph, and also have serratia. That is it bug wise. I don't want to live on sporadic antibiotics every month for obvious reasons. This situation is quite literally pissing me off to new levels, and im being dragged down mentally. I feel my desire to fight slowly being eroded away, and as we all know, that is a very bad thing.
It's not like i'm a chain smoker and don't do any of my mebs/nebs/therapy. For the most part, I do everything right and then a ton more. I've tried everything the doc and you guys have suggested, and i'm still having this problem. So far no tests have shown *****. I doubt it's the hypertonic saline because I had bleeds before the hypertonic.
While I am still very healthy, and nowhere near as bad off as others with CF, this problem has really thrown a monkey wrench in my quality of life. Limitations (and general apprehensivness awareness wise of certain activities) sexually, activity, etc...It's driving me nuts. Especially so because before, there was always a solution that took care (for the most part) of whatever problem I was experiencing. I'm very tenacious and far from a roll over and die type person. But I am at my wits end. Do I go back on pulmozyme now, knowing that I still bleed while off it? Do I quit hypertonic for a week or two to see if I bleed while still off that? If I report this back to my doc come say monday, what might he recommend? If he recommends more antibiotics, do I go on them?
Currently my left arms vein has some form of stoppage in it, that when she was attempting to give me my first midline for this last round of IV's, she couldnt put it in my left arm due to the blockage, and had to put it in my right arm. So technically, i'm now down to only having one good arm for midlines. I seriously SERIOUSLY don't want to get some kind of port, because before all this BS started, I wasn't sick enough (as often) to warrant a port. Plus a port brings forth other worries/possible problems.
What was odd about this bleed, is that it didn't feel the same afterwards like the others do. Usually after a strong bleed, my lungs feel inflamed. This time, nothing. Of course it only hightens my paranoia that today I did some oregano oil under the tongue for the first time since I stopped the pulmozyme. I do vitamin K now, but i'm wondering if I could/should ask my doc for a perscription strength form of vit K??? After I got my flu shot, the nurse commented "Oh your a bleeder...". Sure didn't want to hear that just from a shot.
If all of this is the true begining of the end for me...I will tell you right now I refuse to slowly be eroded away to the point where I have a shadow of my previous quality of life/pursuit of my interests. I will say my goodbyes to my family, and take a trip to somewhere beautiful like yellowstone national park, go sit on the side of a beautiful cliff (probably while coughing up blood), watch the sunset, and then blow my brains out.
Do you guys think there is any point in say going to north florida to some of our well known CF centers and seeing if anyone else can help me, or no? Should I go back onto pulmo and atleast get some of the benefit back while I continue to bleed? I'm nearly out of troubleshooting (if not already out of them) ideas...Some suggestions would really be welcome before I lose all hope and travel to Yellowstone.