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Faust
10-19-2007, 04:00 AM
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.

Faust
10-19-2007, 04:00 AM
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.

Faust
10-19-2007, 04:00 AM
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.

Faust
10-19-2007, 04:00 AM
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.

Faust
10-19-2007, 04:00 AM
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.

Faust
10-19-2007, 04:02 AM
Of course this issue seems to not be going away/getting worse when my long term partner Alison and I finally agreed to seriously pursue genetic testing her, and then if clear try to have our first (and only) child. The more I think about this, the more I get sick. So as I said, any suggestions are welcome.

Faust
10-19-2007, 04:02 AM
Of course this issue seems to not be going away/getting worse when my long term partner Alison and I finally agreed to seriously pursue genetic testing her, and then if clear try to have our first (and only) child. The more I think about this, the more I get sick. So as I said, any suggestions are welcome.

Faust
10-19-2007, 04:02 AM
Of course this issue seems to not be going away/getting worse when my long term partner Alison and I finally agreed to seriously pursue genetic testing her, and then if clear try to have our first (and only) child. The more I think about this, the more I get sick. So as I said, any suggestions are welcome.

Faust
10-19-2007, 04:02 AM
Of course this issue seems to not be going away/getting worse when my long term partner Alison and I finally agreed to seriously pursue genetic testing her, and then if clear try to have our first (and only) child. The more I think about this, the more I get sick. So as I said, any suggestions are welcome.

Faust
10-19-2007, 04:02 AM
Of course this issue seems to not be going away/getting worse when my long term partner Alison and I finally agreed to seriously pursue genetic testing her, and then if clear try to have our first (and only) child. The more I think about this, the more I get sick. So as I said, any suggestions are welcome.

LouLou
10-19-2007, 11:49 AM
Sean, When you have a bad bloody nose, isn't it likely to bleed maybe again the next day? Especially if you forget and blow your nose hard, right? You have to be delicate with that nostril right? Well I think there's something to realize with our lung bleeds. They can take awhile to go away especially if we are doing something to annoy that delicate vein that is trying to heal.. just like blowing our nose after a bloody nose. I sense that you are anxious about this. Try to release it for sometime. Maybe it would help if you think of it as an experiment. Put a deadline on this "project" and make a proper plan just like you would do with a work project. Set the plan and stick to it. For example, I think you should go off Pulmozyme for 1 mo. and write down on a calendar each time you bleed and the quantity. Then the following month do the same with hs. If a month seems like too long try two weeks. Set a limit and a plan - - for example, if I bleed one cup I must get emergency help. (Alison should be made aware of the emergency plan as well so that she can help get you to interventional radialogy for the embolization. I have programmed in the necessary phone #'s into Jared's phone) Also, take care of yourself like you have an infection but without the antibiotics. Don't invision an infection though. You are healthy. If anything your lungs are too clean. Go to sleep earlier, eat well, etc. The anxiety only inflames the situation. Take back control of the reins to this wild horse. It's seems you've handed them over untrustingly to the doctor or worse... the devil. That's not like you. Oh and stop talking about ending it all. That's just silly talk and counterproductive. Congrats to you and Alison taking the next step with genetic testing.

LouLou
10-19-2007, 11:49 AM
Sean, When you have a bad bloody nose, isn't it likely to bleed maybe again the next day? Especially if you forget and blow your nose hard, right? You have to be delicate with that nostril right? Well I think there's something to realize with our lung bleeds. They can take awhile to go away especially if we are doing something to annoy that delicate vein that is trying to heal.. just like blowing our nose after a bloody nose. I sense that you are anxious about this. Try to release it for sometime. Maybe it would help if you think of it as an experiment. Put a deadline on this "project" and make a proper plan just like you would do with a work project. Set the plan and stick to it. For example, I think you should go off Pulmozyme for 1 mo. and write down on a calendar each time you bleed and the quantity. Then the following month do the same with hs. If a month seems like too long try two weeks. Set a limit and a plan - - for example, if I bleed one cup I must get emergency help. (Alison should be made aware of the emergency plan as well so that she can help get you to interventional radialogy for the embolization. I have programmed in the necessary phone #'s into Jared's phone) Also, take care of yourself like you have an infection but without the antibiotics. Don't invision an infection though. You are healthy. If anything your lungs are too clean. Go to sleep earlier, eat well, etc. The anxiety only inflames the situation. Take back control of the reins to this wild horse. It's seems you've handed them over untrustingly to the doctor or worse... the devil. That's not like you. Oh and stop talking about ending it all. That's just silly talk and counterproductive. Congrats to you and Alison taking the next step with genetic testing.

LouLou
10-19-2007, 11:49 AM
Sean, When you have a bad bloody nose, isn't it likely to bleed maybe again the next day? Especially if you forget and blow your nose hard, right? You have to be delicate with that nostril right? Well I think there's something to realize with our lung bleeds. They can take awhile to go away especially if we are doing something to annoy that delicate vein that is trying to heal.. just like blowing our nose after a bloody nose. I sense that you are anxious about this. Try to release it for sometime. Maybe it would help if you think of it as an experiment. Put a deadline on this "project" and make a proper plan just like you would do with a work project. Set the plan and stick to it. For example, I think you should go off Pulmozyme for 1 mo. and write down on a calendar each time you bleed and the quantity. Then the following month do the same with hs. If a month seems like too long try two weeks. Set a limit and a plan - - for example, if I bleed one cup I must get emergency help. (Alison should be made aware of the emergency plan as well so that she can help get you to interventional radialogy for the embolization. I have programmed in the necessary phone #'s into Jared's phone) Also, take care of yourself like you have an infection but without the antibiotics. Don't invision an infection though. You are healthy. If anything your lungs are too clean. Go to sleep earlier, eat well, etc. The anxiety only inflames the situation. Take back control of the reins to this wild horse. It's seems you've handed them over untrustingly to the doctor or worse... the devil. That's not like you. Oh and stop talking about ending it all. That's just silly talk and counterproductive. Congrats to you and Alison taking the next step with genetic testing.

LouLou
10-19-2007, 11:49 AM
Sean, When you have a bad bloody nose, isn't it likely to bleed maybe again the next day? Especially if you forget and blow your nose hard, right? You have to be delicate with that nostril right? Well I think there's something to realize with our lung bleeds. They can take awhile to go away especially if we are doing something to annoy that delicate vein that is trying to heal.. just like blowing our nose after a bloody nose. I sense that you are anxious about this. Try to release it for sometime. Maybe it would help if you think of it as an experiment. Put a deadline on this "project" and make a proper plan just like you would do with a work project. Set the plan and stick to it. For example, I think you should go off Pulmozyme for 1 mo. and write down on a calendar each time you bleed and the quantity. Then the following month do the same with hs. If a month seems like too long try two weeks. Set a limit and a plan - - for example, if I bleed one cup I must get emergency help. (Alison should be made aware of the emergency plan as well so that she can help get you to interventional radialogy for the embolization. I have programmed in the necessary phone #'s into Jared's phone) Also, take care of yourself like you have an infection but without the antibiotics. Don't invision an infection though. You are healthy. If anything your lungs are too clean. Go to sleep earlier, eat well, etc. The anxiety only inflames the situation. Take back control of the reins to this wild horse. It's seems you've handed them over untrustingly to the doctor or worse... the devil. That's not like you. Oh and stop talking about ending it all. That's just silly talk and counterproductive. Congrats to you and Alison taking the next step with genetic testing.

LouLou
10-19-2007, 11:49 AM
Sean, When you have a bad bloody nose, isn't it likely to bleed maybe again the next day? Especially if you forget and blow your nose hard, right? You have to be delicate with that nostril right? Well I think there's something to realize with our lung bleeds. They can take awhile to go away especially if we are doing something to annoy that delicate vein that is trying to heal.. just like blowing our nose after a bloody nose. I sense that you are anxious about this. Try to release it for sometime. Maybe it would help if you think of it as an experiment. Put a deadline on this "project" and make a proper plan just like you would do with a work project. Set the plan and stick to it. For example, I think you should go off Pulmozyme for 1 mo. and write down on a calendar each time you bleed and the quantity. Then the following month do the same with hs. If a month seems like too long try two weeks. Set a limit and a plan - - for example, if I bleed one cup I must get emergency help. (Alison should be made aware of the emergency plan as well so that she can help get you to interventional radialogy for the embolization. I have programmed in the necessary phone #'s into Jared's phone) Also, take care of yourself like you have an infection but without the antibiotics. Don't invision an infection though. You are healthy. If anything your lungs are too clean. Go to sleep earlier, eat well, etc. The anxiety only inflames the situation. Take back control of the reins to this wild horse. It's seems you've handed them over untrustingly to the doctor or worse... the devil. That's not like you. Oh and stop talking about ending it all. That's just silly talk and counterproductive. Congrats to you and Alison taking the next step with genetic testing.

EnergyGal
10-19-2007, 12:43 PM
I was never a heavy bleeder with my cf lungs. I had tiny streaks of blood every now and then and then it stopped when I started to eat extremely healthy. I also changed my enzymes. I no longer take cf enzymes. We never know what can improve someone's health.

I do know that any tiny stressful thought will make you sick and if your body is sick to begin with WATCH OUT.

Talking about having children when you are not emotional and physcical feeling well will just put a bigger burden on your health. It is wonderful to plan for goals but examine if such a decision can make you feel ill, is it worth it?

I would work on the emotional issues that concern you and then see how well your physical symptoms turn out. We are all one big ball of energy<img src="i/expressions/face-icon-small-smile.gif" border="0"> If your mind is not focused and feeling well, guess how the body cries out? Maybe Bleeding, maybe more mucus, maybe poor vein access. Or maybe all of the above.

Take Charge one by one and focus on YOU! Don't let all the other decisions of life complex your current situation.

EnergyGal
10-19-2007, 12:43 PM
I was never a heavy bleeder with my cf lungs. I had tiny streaks of blood every now and then and then it stopped when I started to eat extremely healthy. I also changed my enzymes. I no longer take cf enzymes. We never know what can improve someone's health.

I do know that any tiny stressful thought will make you sick and if your body is sick to begin with WATCH OUT.

Talking about having children when you are not emotional and physcical feeling well will just put a bigger burden on your health. It is wonderful to plan for goals but examine if such a decision can make you feel ill, is it worth it?

I would work on the emotional issues that concern you and then see how well your physical symptoms turn out. We are all one big ball of energy<img src="i/expressions/face-icon-small-smile.gif" border="0"> If your mind is not focused and feeling well, guess how the body cries out? Maybe Bleeding, maybe more mucus, maybe poor vein access. Or maybe all of the above.

Take Charge one by one and focus on YOU! Don't let all the other decisions of life complex your current situation.

EnergyGal
10-19-2007, 12:43 PM
I was never a heavy bleeder with my cf lungs. I had tiny streaks of blood every now and then and then it stopped when I started to eat extremely healthy. I also changed my enzymes. I no longer take cf enzymes. We never know what can improve someone's health.

I do know that any tiny stressful thought will make you sick and if your body is sick to begin with WATCH OUT.

Talking about having children when you are not emotional and physcical feeling well will just put a bigger burden on your health. It is wonderful to plan for goals but examine if such a decision can make you feel ill, is it worth it?

I would work on the emotional issues that concern you and then see how well your physical symptoms turn out. We are all one big ball of energy<img src="i/expressions/face-icon-small-smile.gif" border="0"> If your mind is not focused and feeling well, guess how the body cries out? Maybe Bleeding, maybe more mucus, maybe poor vein access. Or maybe all of the above.

Take Charge one by one and focus on YOU! Don't let all the other decisions of life complex your current situation.

EnergyGal
10-19-2007, 12:43 PM
I was never a heavy bleeder with my cf lungs. I had tiny streaks of blood every now and then and then it stopped when I started to eat extremely healthy. I also changed my enzymes. I no longer take cf enzymes. We never know what can improve someone's health.

I do know that any tiny stressful thought will make you sick and if your body is sick to begin with WATCH OUT.

Talking about having children when you are not emotional and physcical feeling well will just put a bigger burden on your health. It is wonderful to plan for goals but examine if such a decision can make you feel ill, is it worth it?

I would work on the emotional issues that concern you and then see how well your physical symptoms turn out. We are all one big ball of energy<img src="i/expressions/face-icon-small-smile.gif" border="0"> If your mind is not focused and feeling well, guess how the body cries out? Maybe Bleeding, maybe more mucus, maybe poor vein access. Or maybe all of the above.

Take Charge one by one and focus on YOU! Don't let all the other decisions of life complex your current situation.

EnergyGal
10-19-2007, 12:43 PM
I was never a heavy bleeder with my cf lungs. I had tiny streaks of blood every now and then and then it stopped when I started to eat extremely healthy. I also changed my enzymes. I no longer take cf enzymes. We never know what can improve someone's health.

I do know that any tiny stressful thought will make you sick and if your body is sick to begin with WATCH OUT.

Talking about having children when you are not emotional and physcical feeling well will just put a bigger burden on your health. It is wonderful to plan for goals but examine if such a decision can make you feel ill, is it worth it?

I would work on the emotional issues that concern you and then see how well your physical symptoms turn out. We are all one big ball of energy<img src="i/expressions/face-icon-small-smile.gif" border="0"> If your mind is not focused and feeling well, guess how the body cries out? Maybe Bleeding, maybe more mucus, maybe poor vein access. Or maybe all of the above.

Take Charge one by one and focus on YOU! Don't let all the other decisions of life complex your current situation.

miesl
10-19-2007, 01:40 PM
What supplements are you on?

I know there are some that can cause problems in bleeders.

miesl
10-19-2007, 01:40 PM
What supplements are you on?

I know there are some that can cause problems in bleeders.

miesl
10-19-2007, 01:40 PM
What supplements are you on?

I know there are some that can cause problems in bleeders.

miesl
10-19-2007, 01:40 PM
What supplements are you on?

I know there are some that can cause problems in bleeders.

miesl
10-19-2007, 01:40 PM
What supplements are you on?

I know there are some that can cause problems in bleeders.

jodijp
10-19-2007, 01:48 PM
Sorry about your bleed probs, but on a good note, great news about the negative MAC culture. Thank your lucky stars for that one! <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I hear ya about the midline-picc-port dilemma. I'm kinda in the same boat, not wanting to go with something permanant, but may have to bite the bullet and do so. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp
10-19-2007, 01:48 PM
Sorry about your bleed probs, but on a good note, great news about the negative MAC culture. Thank your lucky stars for that one! <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I hear ya about the midline-picc-port dilemma. I'm kinda in the same boat, not wanting to go with something permanant, but may have to bite the bullet and do so. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp
10-19-2007, 01:48 PM
Sorry about your bleed probs, but on a good note, great news about the negative MAC culture. Thank your lucky stars for that one! <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I hear ya about the midline-picc-port dilemma. I'm kinda in the same boat, not wanting to go with something permanant, but may have to bite the bullet and do so. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp
10-19-2007, 01:48 PM
Sorry about your bleed probs, but on a good note, great news about the negative MAC culture. Thank your lucky stars for that one! <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I hear ya about the midline-picc-port dilemma. I'm kinda in the same boat, not wanting to go with something permanant, but may have to bite the bullet and do so. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp
10-19-2007, 01:48 PM
Sorry about your bleed probs, but on a good note, great news about the negative MAC culture. Thank your lucky stars for that one! <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I hear ya about the midline-picc-port dilemma. I'm kinda in the same boat, not wanting to go with something permanant, but may have to bite the bullet and do so. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ratatosk
10-19-2007, 02:27 PM
Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.

Ratatosk
10-19-2007, 02:27 PM
Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.

Ratatosk
10-19-2007, 02:27 PM
Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.

Ratatosk
10-19-2007, 02:27 PM
Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.

Ratatosk
10-19-2007, 02:27 PM
Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.

Faust
10-19-2007, 02:39 PM
Thanks for the responses. It's all just so maddening. The supplements that i'm on aren't anything crazy, and while some can be blood thinners, I doubt the problem is that. I take a good multivitamin/mineral, some fish oil caps (yeah I know they supposedly thin blood), garlic extract caps (same), and tumeric (not sure). I called the CF team today (it's their clinic day so they are very busy), and informed them what happened. She went over my chart, and they told me to go back on pulmozyme!!! Maybe a week was too soon to find if it was the culprit or not, maybe it wasn't. Who knows at this point. I guess ill go back on it. They ordered me a ct scan of the lungs and sinuses, and have a new appointment to go see my ENT (been two years since I saw her and she wanted to do surgery then). It's really hard to keep working, get enough sleep, eat/work out well, and deal with all this bullshit.


Anyone know if there is a therapeutic perscription grade of vitamin K? Last night I took 5 caps (each = 125% rda) of them before bed, after the bleed. I guess another option I could try is fully get off all supplements (even vitamins), besides the seperate vitamin K and see what happens, and just go back on pulmozyme. So f'ing confusing. And as far as the mental aspect of it all, the only thing i'm freaked about is the never ending, phantom bleeds. I know they must have a cause, but nothing is presenting itself.

Faust
10-19-2007, 02:39 PM
Thanks for the responses. It's all just so maddening. The supplements that i'm on aren't anything crazy, and while some can be blood thinners, I doubt the problem is that. I take a good multivitamin/mineral, some fish oil caps (yeah I know they supposedly thin blood), garlic extract caps (same), and tumeric (not sure). I called the CF team today (it's their clinic day so they are very busy), and informed them what happened. She went over my chart, and they told me to go back on pulmozyme!!! Maybe a week was too soon to find if it was the culprit or not, maybe it wasn't. Who knows at this point. I guess ill go back on it. They ordered me a ct scan of the lungs and sinuses, and have a new appointment to go see my ENT (been two years since I saw her and she wanted to do surgery then). It's really hard to keep working, get enough sleep, eat/work out well, and deal with all this bullshit.


Anyone know if there is a therapeutic perscription grade of vitamin K? Last night I took 5 caps (each = 125% rda) of them before bed, after the bleed. I guess another option I could try is fully get off all supplements (even vitamins), besides the seperate vitamin K and see what happens, and just go back on pulmozyme. So f'ing confusing. And as far as the mental aspect of it all, the only thing i'm freaked about is the never ending, phantom bleeds. I know they must have a cause, but nothing is presenting itself.

Faust
10-19-2007, 02:39 PM
Thanks for the responses. It's all just so maddening. The supplements that i'm on aren't anything crazy, and while some can be blood thinners, I doubt the problem is that. I take a good multivitamin/mineral, some fish oil caps (yeah I know they supposedly thin blood), garlic extract caps (same), and tumeric (not sure). I called the CF team today (it's their clinic day so they are very busy), and informed them what happened. She went over my chart, and they told me to go back on pulmozyme!!! Maybe a week was too soon to find if it was the culprit or not, maybe it wasn't. Who knows at this point. I guess ill go back on it. They ordered me a ct scan of the lungs and sinuses, and have a new appointment to go see my ENT (been two years since I saw her and she wanted to do surgery then). It's really hard to keep working, get enough sleep, eat/work out well, and deal with all this bullshit.


Anyone know if there is a therapeutic perscription grade of vitamin K? Last night I took 5 caps (each = 125% rda) of them before bed, after the bleed. I guess another option I could try is fully get off all supplements (even vitamins), besides the seperate vitamin K and see what happens, and just go back on pulmozyme. So f'ing confusing. And as far as the mental aspect of it all, the only thing i'm freaked about is the never ending, phantom bleeds. I know they must have a cause, but nothing is presenting itself.

Faust
10-19-2007, 02:39 PM
Thanks for the responses. It's all just so maddening. The supplements that i'm on aren't anything crazy, and while some can be blood thinners, I doubt the problem is that. I take a good multivitamin/mineral, some fish oil caps (yeah I know they supposedly thin blood), garlic extract caps (same), and tumeric (not sure). I called the CF team today (it's their clinic day so they are very busy), and informed them what happened. She went over my chart, and they told me to go back on pulmozyme!!! Maybe a week was too soon to find if it was the culprit or not, maybe it wasn't. Who knows at this point. I guess ill go back on it. They ordered me a ct scan of the lungs and sinuses, and have a new appointment to go see my ENT (been two years since I saw her and she wanted to do surgery then). It's really hard to keep working, get enough sleep, eat/work out well, and deal with all this bullshit.


Anyone know if there is a therapeutic perscription grade of vitamin K? Last night I took 5 caps (each = 125% rda) of them before bed, after the bleed. I guess another option I could try is fully get off all supplements (even vitamins), besides the seperate vitamin K and see what happens, and just go back on pulmozyme. So f'ing confusing. And as far as the mental aspect of it all, the only thing i'm freaked about is the never ending, phantom bleeds. I know they must have a cause, but nothing is presenting itself.

Faust
10-19-2007, 02:39 PM
Thanks for the responses. It's all just so maddening. The supplements that i'm on aren't anything crazy, and while some can be blood thinners, I doubt the problem is that. I take a good multivitamin/mineral, some fish oil caps (yeah I know they supposedly thin blood), garlic extract caps (same), and tumeric (not sure). I called the CF team today (it's their clinic day so they are very busy), and informed them what happened. She went over my chart, and they told me to go back on pulmozyme!!! Maybe a week was too soon to find if it was the culprit or not, maybe it wasn't. Who knows at this point. I guess ill go back on it. They ordered me a ct scan of the lungs and sinuses, and have a new appointment to go see my ENT (been two years since I saw her and she wanted to do surgery then). It's really hard to keep working, get enough sleep, eat/work out well, and deal with all this bullshit.


Anyone know if there is a therapeutic perscription grade of vitamin K? Last night I took 5 caps (each = 125% rda) of them before bed, after the bleed. I guess another option I could try is fully get off all supplements (even vitamins), besides the seperate vitamin K and see what happens, and just go back on pulmozyme. So f'ing confusing. And as far as the mental aspect of it all, the only thing i'm freaked about is the never ending, phantom bleeds. I know they must have a cause, but nothing is presenting itself.

Faust
10-19-2007, 02:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.</end quote></div>



No I didn't, but next time I go ill ask for a copy of the scans. What was weird was the scan seemed extremely fast. Last time I remember gettin a CT it took a bit, and I moved up and down a bit. This was super ass fast and i didn't move hardly at all.

Faust
10-19-2007, 02:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.</end quote></div>



No I didn't, but next time I go ill ask for a copy of the scans. What was weird was the scan seemed extremely fast. Last time I remember gettin a CT it took a bit, and I moved up and down a bit. This was super ass fast and i didn't move hardly at all.

Faust
10-19-2007, 02:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.</end quote></div>



No I didn't, but next time I go ill ask for a copy of the scans. What was weird was the scan seemed extremely fast. Last time I remember gettin a CT it took a bit, and I moved up and down a bit. This was super ass fast and i didn't move hardly at all.

Faust
10-19-2007, 02:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.</end quote>



No I didn't, but next time I go ill ask for a copy of the scans. What was weird was the scan seemed extremely fast. Last time I remember gettin a CT it took a bit, and I moved up and down a bit. This was super ass fast and i didn't move hardly at all.

Faust
10-19-2007, 02:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Did you ever get a copy of the radiologist's report on your CT Scans? Explaining the supposed cavity, etc. Might be a good idea to see what his/her take was on the scan.</end quote>



No I didn't, but next time I go ill ask for a copy of the scans. What was weird was the scan seemed extremely fast. Last time I remember gettin a CT it took a bit, and I moved up and down a bit. This was super ass fast and i didn't move hardly at all.

Wheezie
10-19-2007, 03:41 PM
my first thought was the same as miesl's - what supplements do you take and could any of them be the culprit? I know it's frustrating but I think there are still a few things you can troubleshoot with. You said you take a few that could be blood thinners - why not try eliminating them, one at a time for a period of time, and see what happens. Like Lauren said too, keep a journal and document your bleeds while you experiment. It may be one or two things, or a combination of things - who knows? That is the frustrating part. But I wouldn't go completely off all supplements at once, because even if you do stop bleeding, how will you know which one was the culprit? On the other hand, if you stop all of them and then the bleeds stop, I suppose you could just start adding them back in one at a time and monitor yourself. My worry with stopping them all at once is that your body has become accustomed to them and they obviously offer you benefits - I don't know much about supplements, but my thinking is that it is hard enough on the body to stop taking one medication it depends on (like you noticed with stopping the pulmozyme) and stopping several all at once seems quite drastic.

Anyway, sorry to ramble on. I know it is frustrating and realistically it may take a while to troubleshoot all the possibilities. But the important thing to remember is that there ARE other possibilities to test - you are not a giver-upper (like that new word? <img src="i/expressions/face-icon-small-tongue.gif" border="0">). It's okay to be pissed off about this. Use that anger to keep pushing on in your investigation. Think of these persistent bleeds as if they were a hard to apprehend criminal. Would let that criminal just get away? Yellowstone is a great place to take a vacation - one which you must return from and tell us all about!!

Wheezie
10-19-2007, 03:41 PM
my first thought was the same as miesl's - what supplements do you take and could any of them be the culprit? I know it's frustrating but I think there are still a few things you can troubleshoot with. You said you take a few that could be blood thinners - why not try eliminating them, one at a time for a period of time, and see what happens. Like Lauren said too, keep a journal and document your bleeds while you experiment. It may be one or two things, or a combination of things - who knows? That is the frustrating part. But I wouldn't go completely off all supplements at once, because even if you do stop bleeding, how will you know which one was the culprit? On the other hand, if you stop all of them and then the bleeds stop, I suppose you could just start adding them back in one at a time and monitor yourself. My worry with stopping them all at once is that your body has become accustomed to them and they obviously offer you benefits - I don't know much about supplements, but my thinking is that it is hard enough on the body to stop taking one medication it depends on (like you noticed with stopping the pulmozyme) and stopping several all at once seems quite drastic.

Anyway, sorry to ramble on. I know it is frustrating and realistically it may take a while to troubleshoot all the possibilities. But the important thing to remember is that there ARE other possibilities to test - you are not a giver-upper (like that new word? <img src="i/expressions/face-icon-small-tongue.gif" border="0">). It's okay to be pissed off about this. Use that anger to keep pushing on in your investigation. Think of these persistent bleeds as if they were a hard to apprehend criminal. Would let that criminal just get away? Yellowstone is a great place to take a vacation - one which you must return from and tell us all about!!

Wheezie
10-19-2007, 03:41 PM
my first thought was the same as miesl's - what supplements do you take and could any of them be the culprit? I know it's frustrating but I think there are still a few things you can troubleshoot with. You said you take a few that could be blood thinners - why not try eliminating them, one at a time for a period of time, and see what happens. Like Lauren said too, keep a journal and document your bleeds while you experiment. It may be one or two things, or a combination of things - who knows? That is the frustrating part. But I wouldn't go completely off all supplements at once, because even if you do stop bleeding, how will you know which one was the culprit? On the other hand, if you stop all of them and then the bleeds stop, I suppose you could just start adding them back in one at a time and monitor yourself. My worry with stopping them all at once is that your body has become accustomed to them and they obviously offer you benefits - I don't know much about supplements, but my thinking is that it is hard enough on the body to stop taking one medication it depends on (like you noticed with stopping the pulmozyme) and stopping several all at once seems quite drastic.

Anyway, sorry to ramble on. I know it is frustrating and realistically it may take a while to troubleshoot all the possibilities. But the important thing to remember is that there ARE other possibilities to test - you are not a giver-upper (like that new word? <img src="i/expressions/face-icon-small-tongue.gif" border="0">). It's okay to be pissed off about this. Use that anger to keep pushing on in your investigation. Think of these persistent bleeds as if they were a hard to apprehend criminal. Would let that criminal just get away? Yellowstone is a great place to take a vacation - one which you must return from and tell us all about!!

Wheezie
10-19-2007, 03:41 PM
my first thought was the same as miesl's - what supplements do you take and could any of them be the culprit? I know it's frustrating but I think there are still a few things you can troubleshoot with. You said you take a few that could be blood thinners - why not try eliminating them, one at a time for a period of time, and see what happens. Like Lauren said too, keep a journal and document your bleeds while you experiment. It may be one or two things, or a combination of things - who knows? That is the frustrating part. But I wouldn't go completely off all supplements at once, because even if you do stop bleeding, how will you know which one was the culprit? On the other hand, if you stop all of them and then the bleeds stop, I suppose you could just start adding them back in one at a time and monitor yourself. My worry with stopping them all at once is that your body has become accustomed to them and they obviously offer you benefits - I don't know much about supplements, but my thinking is that it is hard enough on the body to stop taking one medication it depends on (like you noticed with stopping the pulmozyme) and stopping several all at once seems quite drastic.

Anyway, sorry to ramble on. I know it is frustrating and realistically it may take a while to troubleshoot all the possibilities. But the important thing to remember is that there ARE other possibilities to test - you are not a giver-upper (like that new word? <img src="i/expressions/face-icon-small-tongue.gif" border="0">). It's okay to be pissed off about this. Use that anger to keep pushing on in your investigation. Think of these persistent bleeds as if they were a hard to apprehend criminal. Would let that criminal just get away? Yellowstone is a great place to take a vacation - one which you must return from and tell us all about!!

Wheezie
10-19-2007, 03:41 PM
my first thought was the same as miesl's - what supplements do you take and could any of them be the culprit? I know it's frustrating but I think there are still a few things you can troubleshoot with. You said you take a few that could be blood thinners - why not try eliminating them, one at a time for a period of time, and see what happens. Like Lauren said too, keep a journal and document your bleeds while you experiment. It may be one or two things, or a combination of things - who knows? That is the frustrating part. But I wouldn't go completely off all supplements at once, because even if you do stop bleeding, how will you know which one was the culprit? On the other hand, if you stop all of them and then the bleeds stop, I suppose you could just start adding them back in one at a time and monitor yourself. My worry with stopping them all at once is that your body has become accustomed to them and they obviously offer you benefits - I don't know much about supplements, but my thinking is that it is hard enough on the body to stop taking one medication it depends on (like you noticed with stopping the pulmozyme) and stopping several all at once seems quite drastic.

Anyway, sorry to ramble on. I know it is frustrating and realistically it may take a while to troubleshoot all the possibilities. But the important thing to remember is that there ARE other possibilities to test - you are not a giver-upper (like that new word? <img src="i/expressions/face-icon-small-tongue.gif" border="0">). It's okay to be pissed off about this. Use that anger to keep pushing on in your investigation. Think of these persistent bleeds as if they were a hard to apprehend criminal. Would let that criminal just get away? Yellowstone is a great place to take a vacation - one which you must return from and tell us all about!!

Diane
10-19-2007, 03:48 PM
I completely understand the frame of mind you are in because i have been there myself more than once. After my first embolization i thought i was "safe" from future bleeds and within 2 days of being home i wound up right back in the hospital with another bleed. Then a month and a half later another i had another large bleed and my second embolization. I thought there was some conspiracy going on within my body trying to terrorize me. I would steer clear of every single thing you can imagine that might trigger a bleed. The fish oil caps would be where i'd start, along with the garlic and any anti-inflammatories , ibuprofen etc . Also green tea is also a bad thing ( not sure if you drink that). Weight lifting may be contributing to your bleeding as well if you are lifting heavy weights. Just imagine the strain that puts on the offending area that bled previously and is trying to heal, but is being rushed with blood with each lifting session. Do you go in places that have smoke in them? I avoid restaurants that arent all smoke free or at least have a completely separate room for non smokers that is free of all smoke. I read about people having problems with Pulmozyme and bleeding, yet when i go in the hospital for hemoptysis they put me on Pulmozyme twice a day versus just once per day. You mentioned using hypertonic saline and pulmozyme? Maybe doing the two is just too muich irritation for your lungs? Has this bleeding started geting worse over time after starting the hypertonic saline along with the pulmozyme? Anything inhaled is an irritant to the lungs especially lungs that tend to bleed. Do you wear cologne? Does your Girlfriend wear perfume? I am allergic to both and cannot be around either. Candles, airfreshners etc. could also be a culprit if you have any in the house. I am trying to think of anything i can throw out there for you that might be a culprit because i know how unbelievably frustrating it is to go thru what you are going thru. I also have a cavity in my left lung and no clue how it got there. It has a fungus ball residing in it and i have not a clue how that got there either. You're not alone Sean, and your thoughts arent as far out as you might think. Its natural to want a way out of a mess we cant seem to figure out. But going to Yellowstone National Park and ending it all, is not an option.

Diane
10-19-2007, 03:48 PM
I completely understand the frame of mind you are in because i have been there myself more than once. After my first embolization i thought i was "safe" from future bleeds and within 2 days of being home i wound up right back in the hospital with another bleed. Then a month and a half later another i had another large bleed and my second embolization. I thought there was some conspiracy going on within my body trying to terrorize me. I would steer clear of every single thing you can imagine that might trigger a bleed. The fish oil caps would be where i'd start, along with the garlic and any anti-inflammatories , ibuprofen etc . Also green tea is also a bad thing ( not sure if you drink that). Weight lifting may be contributing to your bleeding as well if you are lifting heavy weights. Just imagine the strain that puts on the offending area that bled previously and is trying to heal, but is being rushed with blood with each lifting session. Do you go in places that have smoke in them? I avoid restaurants that arent all smoke free or at least have a completely separate room for non smokers that is free of all smoke. I read about people having problems with Pulmozyme and bleeding, yet when i go in the hospital for hemoptysis they put me on Pulmozyme twice a day versus just once per day. You mentioned using hypertonic saline and pulmozyme? Maybe doing the two is just too muich irritation for your lungs? Has this bleeding started geting worse over time after starting the hypertonic saline along with the pulmozyme? Anything inhaled is an irritant to the lungs especially lungs that tend to bleed. Do you wear cologne? Does your Girlfriend wear perfume? I am allergic to both and cannot be around either. Candles, airfreshners etc. could also be a culprit if you have any in the house. I am trying to think of anything i can throw out there for you that might be a culprit because i know how unbelievably frustrating it is to go thru what you are going thru. I also have a cavity in my left lung and no clue how it got there. It has a fungus ball residing in it and i have not a clue how that got there either. You're not alone Sean, and your thoughts arent as far out as you might think. Its natural to want a way out of a mess we cant seem to figure out. But going to Yellowstone National Park and ending it all, is not an option.

Diane
10-19-2007, 03:48 PM
I completely understand the frame of mind you are in because i have been there myself more than once. After my first embolization i thought i was "safe" from future bleeds and within 2 days of being home i wound up right back in the hospital with another bleed. Then a month and a half later another i had another large bleed and my second embolization. I thought there was some conspiracy going on within my body trying to terrorize me. I would steer clear of every single thing you can imagine that might trigger a bleed. The fish oil caps would be where i'd start, along with the garlic and any anti-inflammatories , ibuprofen etc . Also green tea is also a bad thing ( not sure if you drink that). Weight lifting may be contributing to your bleeding as well if you are lifting heavy weights. Just imagine the strain that puts on the offending area that bled previously and is trying to heal, but is being rushed with blood with each lifting session. Do you go in places that have smoke in them? I avoid restaurants that arent all smoke free or at least have a completely separate room for non smokers that is free of all smoke. I read about people having problems with Pulmozyme and bleeding, yet when i go in the hospital for hemoptysis they put me on Pulmozyme twice a day versus just once per day. You mentioned using hypertonic saline and pulmozyme? Maybe doing the two is just too muich irritation for your lungs? Has this bleeding started geting worse over time after starting the hypertonic saline along with the pulmozyme? Anything inhaled is an irritant to the lungs especially lungs that tend to bleed. Do you wear cologne? Does your Girlfriend wear perfume? I am allergic to both and cannot be around either. Candles, airfreshners etc. could also be a culprit if you have any in the house. I am trying to think of anything i can throw out there for you that might be a culprit because i know how unbelievably frustrating it is to go thru what you are going thru. I also have a cavity in my left lung and no clue how it got there. It has a fungus ball residing in it and i have not a clue how that got there either. You're not alone Sean, and your thoughts arent as far out as you might think. Its natural to want a way out of a mess we cant seem to figure out. But going to Yellowstone National Park and ending it all, is not an option.

Diane
10-19-2007, 03:48 PM
I completely understand the frame of mind you are in because i have been there myself more than once. After my first embolization i thought i was "safe" from future bleeds and within 2 days of being home i wound up right back in the hospital with another bleed. Then a month and a half later another i had another large bleed and my second embolization. I thought there was some conspiracy going on within my body trying to terrorize me. I would steer clear of every single thing you can imagine that might trigger a bleed. The fish oil caps would be where i'd start, along with the garlic and any anti-inflammatories , ibuprofen etc . Also green tea is also a bad thing ( not sure if you drink that). Weight lifting may be contributing to your bleeding as well if you are lifting heavy weights. Just imagine the strain that puts on the offending area that bled previously and is trying to heal, but is being rushed with blood with each lifting session. Do you go in places that have smoke in them? I avoid restaurants that arent all smoke free or at least have a completely separate room for non smokers that is free of all smoke. I read about people having problems with Pulmozyme and bleeding, yet when i go in the hospital for hemoptysis they put me on Pulmozyme twice a day versus just once per day. You mentioned using hypertonic saline and pulmozyme? Maybe doing the two is just too muich irritation for your lungs? Has this bleeding started geting worse over time after starting the hypertonic saline along with the pulmozyme? Anything inhaled is an irritant to the lungs especially lungs that tend to bleed. Do you wear cologne? Does your Girlfriend wear perfume? I am allergic to both and cannot be around either. Candles, airfreshners etc. could also be a culprit if you have any in the house. I am trying to think of anything i can throw out there for you that might be a culprit because i know how unbelievably frustrating it is to go thru what you are going thru. I also have a cavity in my left lung and no clue how it got there. It has a fungus ball residing in it and i have not a clue how that got there either. You're not alone Sean, and your thoughts arent as far out as you might think. Its natural to want a way out of a mess we cant seem to figure out. But going to Yellowstone National Park and ending it all, is not an option.

Diane
10-19-2007, 03:48 PM
I completely understand the frame of mind you are in because i have been there myself more than once. After my first embolization i thought i was "safe" from future bleeds and within 2 days of being home i wound up right back in the hospital with another bleed. Then a month and a half later another i had another large bleed and my second embolization. I thought there was some conspiracy going on within my body trying to terrorize me. I would steer clear of every single thing you can imagine that might trigger a bleed. The fish oil caps would be where i'd start, along with the garlic and any anti-inflammatories , ibuprofen etc . Also green tea is also a bad thing ( not sure if you drink that). Weight lifting may be contributing to your bleeding as well if you are lifting heavy weights. Just imagine the strain that puts on the offending area that bled previously and is trying to heal, but is being rushed with blood with each lifting session. Do you go in places that have smoke in them? I avoid restaurants that arent all smoke free or at least have a completely separate room for non smokers that is free of all smoke. I read about people having problems with Pulmozyme and bleeding, yet when i go in the hospital for hemoptysis they put me on Pulmozyme twice a day versus just once per day. You mentioned using hypertonic saline and pulmozyme? Maybe doing the two is just too muich irritation for your lungs? Has this bleeding started geting worse over time after starting the hypertonic saline along with the pulmozyme? Anything inhaled is an irritant to the lungs especially lungs that tend to bleed. Do you wear cologne? Does your Girlfriend wear perfume? I am allergic to both and cannot be around either. Candles, airfreshners etc. could also be a culprit if you have any in the house. I am trying to think of anything i can throw out there for you that might be a culprit because i know how unbelievably frustrating it is to go thru what you are going thru. I also have a cavity in my left lung and no clue how it got there. It has a fungus ball residing in it and i have not a clue how that got there either. You're not alone Sean, and your thoughts arent as far out as you might think. Its natural to want a way out of a mess we cant seem to figure out. But going to Yellowstone National Park and ending it all, is not an option.

Diane
10-19-2007, 03:51 PM
OOPS i forgot to mention....Have you ever tried L-Lysine? L-Lysine has helped me with my bleeds. You may want to give that a try........... I take 1000mg 3 times a day. If i am having a lot of streaking or hemoptysis i take 1000mg. 4 times a day.

Diane
10-19-2007, 03:51 PM
OOPS i forgot to mention....Have you ever tried L-Lysine? L-Lysine has helped me with my bleeds. You may want to give that a try........... I take 1000mg 3 times a day. If i am having a lot of streaking or hemoptysis i take 1000mg. 4 times a day.

Diane
10-19-2007, 03:51 PM
OOPS i forgot to mention....Have you ever tried L-Lysine? L-Lysine has helped me with my bleeds. You may want to give that a try........... I take 1000mg 3 times a day. If i am having a lot of streaking or hemoptysis i take 1000mg. 4 times a day.

Diane
10-19-2007, 03:51 PM
OOPS i forgot to mention....Have you ever tried L-Lysine? L-Lysine has helped me with my bleeds. You may want to give that a try........... I take 1000mg 3 times a day. If i am having a lot of streaking or hemoptysis i take 1000mg. 4 times a day.

Diane
10-19-2007, 03:51 PM
OOPS i forgot to mention....Have you ever tried L-Lysine? L-Lysine has helped me with my bleeds. You may want to give that a try........... I take 1000mg 3 times a day. If i am having a lot of streaking or hemoptysis i take 1000mg. 4 times a day.

EnergyGal
10-19-2007, 04:12 PM
I would buy the book "Energy MEdicine" by Donna EDEn and FEinstein PhD.

They explain how to energy test to foods, Vitamins and of course my favorite DRUGS!

When you learn to do this, you can test yourself to see if your body is showing a weakneess instead of playing a wait and see game.

It is simple to learn and anyone can do this.

IF money is not an issue, you can look to find a Touch for Health practitioner or some chiropractors can test you.

I rather save my money of course and practice this myself along with my husbands help when I need it.

If you can afford the spare change then seek one of them out. ASk them over the phone before you spend the money that you are trying to find the culprit and you believe it could be one of your medications. If they are willing to help you then you know you have the right practitioner.

GOOD Luck

EnergyGal
10-19-2007, 04:12 PM
I would buy the book "Energy MEdicine" by Donna EDEn and FEinstein PhD.

They explain how to energy test to foods, Vitamins and of course my favorite DRUGS!

When you learn to do this, you can test yourself to see if your body is showing a weakneess instead of playing a wait and see game.

It is simple to learn and anyone can do this.

IF money is not an issue, you can look to find a Touch for Health practitioner or some chiropractors can test you.

I rather save my money of course and practice this myself along with my husbands help when I need it.

If you can afford the spare change then seek one of them out. ASk them over the phone before you spend the money that you are trying to find the culprit and you believe it could be one of your medications. If they are willing to help you then you know you have the right practitioner.

GOOD Luck

EnergyGal
10-19-2007, 04:12 PM
I would buy the book "Energy MEdicine" by Donna EDEn and FEinstein PhD.

They explain how to energy test to foods, Vitamins and of course my favorite DRUGS!

When you learn to do this, you can test yourself to see if your body is showing a weakneess instead of playing a wait and see game.

It is simple to learn and anyone can do this.

IF money is not an issue, you can look to find a Touch for Health practitioner or some chiropractors can test you.

I rather save my money of course and practice this myself along with my husbands help when I need it.

If you can afford the spare change then seek one of them out. ASk them over the phone before you spend the money that you are trying to find the culprit and you believe it could be one of your medications. If they are willing to help you then you know you have the right practitioner.

GOOD Luck

EnergyGal
10-19-2007, 04:12 PM
I would buy the book "Energy MEdicine" by Donna EDEn and FEinstein PhD.

They explain how to energy test to foods, Vitamins and of course my favorite DRUGS!

When you learn to do this, you can test yourself to see if your body is showing a weakneess instead of playing a wait and see game.

It is simple to learn and anyone can do this.

IF money is not an issue, you can look to find a Touch for Health practitioner or some chiropractors can test you.

I rather save my money of course and practice this myself along with my husbands help when I need it.

If you can afford the spare change then seek one of them out. ASk them over the phone before you spend the money that you are trying to find the culprit and you believe it could be one of your medications. If they are willing to help you then you know you have the right practitioner.

GOOD Luck

EnergyGal
10-19-2007, 04:12 PM
I would buy the book "Energy MEdicine" by Donna EDEn and FEinstein PhD.

They explain how to energy test to foods, Vitamins and of course my favorite DRUGS!

When you learn to do this, you can test yourself to see if your body is showing a weakneess instead of playing a wait and see game.

It is simple to learn and anyone can do this.

IF money is not an issue, you can look to find a Touch for Health practitioner or some chiropractors can test you.

I rather save my money of course and practice this myself along with my husbands help when I need it.

If you can afford the spare change then seek one of them out. ASk them over the phone before you spend the money that you are trying to find the culprit and you believe it could be one of your medications. If they are willing to help you then you know you have the right practitioner.

GOOD Luck

EnergyGal
10-19-2007, 04:16 PM
It is possible that you can bleed under stress and worry is the perfect bullet for the added stress.

Look this up when you can
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com
">http://emofree.com
</a>

EnergyGal
10-19-2007, 04:16 PM
It is possible that you can bleed under stress and worry is the perfect bullet for the added stress.

Look this up when you can
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com
">http://emofree.com
</a>

EnergyGal
10-19-2007, 04:16 PM
It is possible that you can bleed under stress and worry is the perfect bullet for the added stress.

Look this up when you can
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com
">http://emofree.com
</a>

EnergyGal
10-19-2007, 04:16 PM
It is possible that you can bleed under stress and worry is the perfect bullet for the added stress.

Look this up when you can
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com
">http://emofree.com
</a>

EnergyGal
10-19-2007, 04:16 PM
It is possible that you can bleed under stress and worry is the perfect bullet for the added stress.

Look this up when you can
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com
">http://emofree.com
</a>

EnergyGal
10-19-2007, 04:24 PM
CHECK out THIS Site!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tfhka.org/practitioner.htm
">http://www.tfhka.org/practitioner.htm
</a>
Hopefully you can find someone in your area that can help you discover what is causing you to bleed. It is a shot in the dark but I would try everything possible and I have a lot of faith in muscle testing aka energy testing the Touch 4 health way.

You can also try process of elimination like you are doing now but that can take a long time.


If you cannot find someone from the above link in your area, you can try one of Donna Eden's Practitioner who can also help you. I work with one of the energy coachs in this section.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.energymedicinedirectory.com/energy_medicine_usa.html">http://www.energymedicinedirec...ergy_medicine_usa.html</a>

EnergyGal
10-19-2007, 04:24 PM
CHECK out THIS Site!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tfhka.org/practitioner.htm
">http://www.tfhka.org/practitioner.htm
</a>
Hopefully you can find someone in your area that can help you discover what is causing you to bleed. It is a shot in the dark but I would try everything possible and I have a lot of faith in muscle testing aka energy testing the Touch 4 health way.

You can also try process of elimination like you are doing now but that can take a long time.


If you cannot find someone from the above link in your area, you can try one of Donna Eden's Practitioner who can also help you. I work with one of the energy coachs in this section.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.energymedicinedirectory.com/energy_medicine_usa.html">http://www.energymedicinedirec...ergy_medicine_usa.html</a>

EnergyGal
10-19-2007, 04:24 PM
CHECK out THIS Site!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tfhka.org/practitioner.htm
">http://www.tfhka.org/practitioner.htm
</a>
Hopefully you can find someone in your area that can help you discover what is causing you to bleed. It is a shot in the dark but I would try everything possible and I have a lot of faith in muscle testing aka energy testing the Touch 4 health way.

You can also try process of elimination like you are doing now but that can take a long time.


If you cannot find someone from the above link in your area, you can try one of Donna Eden's Practitioner who can also help you. I work with one of the energy coachs in this section.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.energymedicinedirectory.com/energy_medicine_usa.html">http://www.energymedicinedirec...ergy_medicine_usa.html</a>

EnergyGal
10-19-2007, 04:24 PM
CHECK out THIS Site!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tfhka.org/practitioner.htm
">http://www.tfhka.org/practitioner.htm
</a>
Hopefully you can find someone in your area that can help you discover what is causing you to bleed. It is a shot in the dark but I would try everything possible and I have a lot of faith in muscle testing aka energy testing the Touch 4 health way.

You can also try process of elimination like you are doing now but that can take a long time.


If you cannot find someone from the above link in your area, you can try one of Donna Eden's Practitioner who can also help you. I work with one of the energy coachs in this section.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.energymedicinedirectory.com/energy_medicine_usa.html">http://www.energymedicinedirec...ergy_medicine_usa.html</a>

EnergyGal
10-19-2007, 04:24 PM
CHECK out THIS Site!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.tfhka.org/practitioner.htm
">http://www.tfhka.org/practitioner.htm
</a>
Hopefully you can find someone in your area that can help you discover what is causing you to bleed. It is a shot in the dark but I would try everything possible and I have a lot of faith in muscle testing aka energy testing the Touch 4 health way.

You can also try process of elimination like you are doing now but that can take a long time.


If you cannot find someone from the above link in your area, you can try one of Donna Eden's Practitioner who can also help you. I work with one of the energy coachs in this section.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.energymedicinedirectory.com/energy_medicine_usa.html">http://www.energymedicinedirec...ergy_medicine_usa.html</a>

gsplover
10-19-2007, 10:10 PM
Sean,

I understand completely. I had the embolization done about 6 weeks ago. I have had three small bleeds since. Two of those bleeds were this week. Mine happened this morning as I was putting my vest on and before doing any meds. Sound familar? I didn't have any of the normal warning signs either. Even when I was in the hospital my doctor could not see an active bleed with a bronch or CT scan with dye. I have always had a productive cough not an irritating cough. I have been having issues since june and my doctor still has not idea what is going on. At least he is very pro-active with my health but none the less it is all very frustrating.

We have both been healthier CFers and it is really hard to deal with these changes. Keep your chin up. Hopefully a reason will present itself!

gsplover
10-19-2007, 10:10 PM
Sean,

I understand completely. I had the embolization done about 6 weeks ago. I have had three small bleeds since. Two of those bleeds were this week. Mine happened this morning as I was putting my vest on and before doing any meds. Sound familar? I didn't have any of the normal warning signs either. Even when I was in the hospital my doctor could not see an active bleed with a bronch or CT scan with dye. I have always had a productive cough not an irritating cough. I have been having issues since june and my doctor still has not idea what is going on. At least he is very pro-active with my health but none the less it is all very frustrating.

We have both been healthier CFers and it is really hard to deal with these changes. Keep your chin up. Hopefully a reason will present itself!

gsplover
10-19-2007, 10:10 PM
Sean,

I understand completely. I had the embolization done about 6 weeks ago. I have had three small bleeds since. Two of those bleeds were this week. Mine happened this morning as I was putting my vest on and before doing any meds. Sound familar? I didn't have any of the normal warning signs either. Even when I was in the hospital my doctor could not see an active bleed with a bronch or CT scan with dye. I have always had a productive cough not an irritating cough. I have been having issues since june and my doctor still has not idea what is going on. At least he is very pro-active with my health but none the less it is all very frustrating.

We have both been healthier CFers and it is really hard to deal with these changes. Keep your chin up. Hopefully a reason will present itself!

gsplover
10-19-2007, 10:10 PM
Sean,

I understand completely. I had the embolization done about 6 weeks ago. I have had three small bleeds since. Two of those bleeds were this week. Mine happened this morning as I was putting my vest on and before doing any meds. Sound familar? I didn't have any of the normal warning signs either. Even when I was in the hospital my doctor could not see an active bleed with a bronch or CT scan with dye. I have always had a productive cough not an irritating cough. I have been having issues since june and my doctor still has not idea what is going on. At least he is very pro-active with my health but none the less it is all very frustrating.

We have both been healthier CFers and it is really hard to deal with these changes. Keep your chin up. Hopefully a reason will present itself!

gsplover
10-19-2007, 10:10 PM
Sean,

I understand completely. I had the embolization done about 6 weeks ago. I have had three small bleeds since. Two of those bleeds were this week. Mine happened this morning as I was putting my vest on and before doing any meds. Sound familar? I didn't have any of the normal warning signs either. Even when I was in the hospital my doctor could not see an active bleed with a bronch or CT scan with dye. I have always had a productive cough not an irritating cough. I have been having issues since june and my doctor still has not idea what is going on. At least he is very pro-active with my health but none the less it is all very frustrating.

We have both been healthier CFers and it is really hard to deal with these changes. Keep your chin up. Hopefully a reason will present itself!

dramamama
10-20-2007, 07:25 PM
Hi Sean-
I am so sorry you are having such a hard time with the bleeds. As you know I am a supplement queen and I can tell you without a doubt that fish oil can really thin your blood. And have you seen the latest study with cf adults and fish oil? For some reason, cf adults actually faired worse and than the younger cfers on fish oil supplements. (Lowered lung function and weight loss were associated with high dose) Not to say don't take it, but maybe only take one capsule a day.

Also, there is a very recent study that suggests the problem with cf and fatty acid has more to do with linoleic acid than the omega 3 fatty acids. The new thought process is that there is an inherent defect that allows for the over consumpton/utilization of linoleic leading to less gamma linoleic acid and then the omega 3 's that are produced from this. If you are bulking up with omega 3's, but are not supplementing with linoleic, you could actually make the situation worse.

If I had to stay on one of those supplemets I would say garlic for many reasons. It produces glutathione, inhibits quorum sensing, contains germanium which is a known gamma interferon inducer (Type 1 immune response which is what we in cf want), is an alkalizing food which is so important in our overly acidic bodies and is anti-bacterial, anti-viral and anti-fungal. Did you know that more acidic your body gets the more issues you are going to have? which leads me to the next suggestion...

have you thought about giving up the beer? Alcohol does thin the blood and it dries out your lungs and it depletes glutathione...all very bad for you. And it acidifies your body even more....Why not give up alcohol just for a bit? See if that might help yu stop the bleeds? Thoughts?

I hate that you are going through this right now....don't lose faith!!! You will find what is triggering these bleeds.
mandy

dramamama
10-20-2007, 07:25 PM
Hi Sean-
I am so sorry you are having such a hard time with the bleeds. As you know I am a supplement queen and I can tell you without a doubt that fish oil can really thin your blood. And have you seen the latest study with cf adults and fish oil? For some reason, cf adults actually faired worse and than the younger cfers on fish oil supplements. (Lowered lung function and weight loss were associated with high dose) Not to say don't take it, but maybe only take one capsule a day.

Also, there is a very recent study that suggests the problem with cf and fatty acid has more to do with linoleic acid than the omega 3 fatty acids. The new thought process is that there is an inherent defect that allows for the over consumpton/utilization of linoleic leading to less gamma linoleic acid and then the omega 3 's that are produced from this. If you are bulking up with omega 3's, but are not supplementing with linoleic, you could actually make the situation worse.

If I had to stay on one of those supplemets I would say garlic for many reasons. It produces glutathione, inhibits quorum sensing, contains germanium which is a known gamma interferon inducer (Type 1 immune response which is what we in cf want), is an alkalizing food which is so important in our overly acidic bodies and is anti-bacterial, anti-viral and anti-fungal. Did you know that more acidic your body gets the more issues you are going to have? which leads me to the next suggestion...

have you thought about giving up the beer? Alcohol does thin the blood and it dries out your lungs and it depletes glutathione...all very bad for you. And it acidifies your body even more....Why not give up alcohol just for a bit? See if that might help yu stop the bleeds? Thoughts?

I hate that you are going through this right now....don't lose faith!!! You will find what is triggering these bleeds.
mandy

dramamama
10-20-2007, 07:25 PM
Hi Sean-
I am so sorry you are having such a hard time with the bleeds. As you know I am a supplement queen and I can tell you without a doubt that fish oil can really thin your blood. And have you seen the latest study with cf adults and fish oil? For some reason, cf adults actually faired worse and than the younger cfers on fish oil supplements. (Lowered lung function and weight loss were associated with high dose) Not to say don't take it, but maybe only take one capsule a day.

Also, there is a very recent study that suggests the problem with cf and fatty acid has more to do with linoleic acid than the omega 3 fatty acids. The new thought process is that there is an inherent defect that allows for the over consumpton/utilization of linoleic leading to less gamma linoleic acid and then the omega 3 's that are produced from this. If you are bulking up with omega 3's, but are not supplementing with linoleic, you could actually make the situation worse.

If I had to stay on one of those supplemets I would say garlic for many reasons. It produces glutathione, inhibits quorum sensing, contains germanium which is a known gamma interferon inducer (Type 1 immune response which is what we in cf want), is an alkalizing food which is so important in our overly acidic bodies and is anti-bacterial, anti-viral and anti-fungal. Did you know that more acidic your body gets the more issues you are going to have? which leads me to the next suggestion...

have you thought about giving up the beer? Alcohol does thin the blood and it dries out your lungs and it depletes glutathione...all very bad for you. And it acidifies your body even more....Why not give up alcohol just for a bit? See if that might help yu stop the bleeds? Thoughts?

I hate that you are going through this right now....don't lose faith!!! You will find what is triggering these bleeds.
mandy

dramamama
10-20-2007, 07:25 PM
Hi Sean-
I am so sorry you are having such a hard time with the bleeds. As you know I am a supplement queen and I can tell you without a doubt that fish oil can really thin your blood. And have you seen the latest study with cf adults and fish oil? For some reason, cf adults actually faired worse and than the younger cfers on fish oil supplements. (Lowered lung function and weight loss were associated with high dose) Not to say don't take it, but maybe only take one capsule a day.

Also, there is a very recent study that suggests the problem with cf and fatty acid has more to do with linoleic acid than the omega 3 fatty acids. The new thought process is that there is an inherent defect that allows for the over consumpton/utilization of linoleic leading to less gamma linoleic acid and then the omega 3 's that are produced from this. If you are bulking up with omega 3's, but are not supplementing with linoleic, you could actually make the situation worse.

If I had to stay on one of those supplemets I would say garlic for many reasons. It produces glutathione, inhibits quorum sensing, contains germanium which is a known gamma interferon inducer (Type 1 immune response which is what we in cf want), is an alkalizing food which is so important in our overly acidic bodies and is anti-bacterial, anti-viral and anti-fungal. Did you know that more acidic your body gets the more issues you are going to have? which leads me to the next suggestion...

have you thought about giving up the beer? Alcohol does thin the blood and it dries out your lungs and it depletes glutathione...all very bad for you. And it acidifies your body even more....Why not give up alcohol just for a bit? See if that might help yu stop the bleeds? Thoughts?

I hate that you are going through this right now....don't lose faith!!! You will find what is triggering these bleeds.
mandy

dramamama
10-20-2007, 07:25 PM
Hi Sean-
I am so sorry you are having such a hard time with the bleeds. As you know I am a supplement queen and I can tell you without a doubt that fish oil can really thin your blood. And have you seen the latest study with cf adults and fish oil? For some reason, cf adults actually faired worse and than the younger cfers on fish oil supplements. (Lowered lung function and weight loss were associated with high dose) Not to say don't take it, but maybe only take one capsule a day.

Also, there is a very recent study that suggests the problem with cf and fatty acid has more to do with linoleic acid than the omega 3 fatty acids. The new thought process is that there is an inherent defect that allows for the over consumpton/utilization of linoleic leading to less gamma linoleic acid and then the omega 3 's that are produced from this. If you are bulking up with omega 3's, but are not supplementing with linoleic, you could actually make the situation worse.

If I had to stay on one of those supplemets I would say garlic for many reasons. It produces glutathione, inhibits quorum sensing, contains germanium which is a known gamma interferon inducer (Type 1 immune response which is what we in cf want), is an alkalizing food which is so important in our overly acidic bodies and is anti-bacterial, anti-viral and anti-fungal. Did you know that more acidic your body gets the more issues you are going to have? which leads me to the next suggestion...

have you thought about giving up the beer? Alcohol does thin the blood and it dries out your lungs and it depletes glutathione...all very bad for you. And it acidifies your body even more....Why not give up alcohol just for a bit? See if that might help yu stop the bleeds? Thoughts?

I hate that you are going through this right now....don't lose faith!!! You will find what is triggering these bleeds.
mandy

Faust
10-21-2007, 01:03 AM
Thank you guys so much for your responses. It's nice to know others are fighting the same fight I am fighting. Here I am 5'11, 200lbs and i'm a pretty ripped up guy. I do all my crap right, take care of myself, diligent about care, etc. And yet I have this phantom problem causing me grief. I am cool with a problem if it doesn't impact my quality of life, but this does, and relationships have eroded due to it.


My previous anger that I could spike with and throw someone through a wall (who had it coming), now has no one i can throw through a wall. There is so reason, and no purpose. I follow the conventional approaches, I follow the alternative approaches. But in my search for what is causing the bleeds, im stopping all supplements. Something tells me I bleed anyways

Faust
10-21-2007, 01:03 AM
Thank you guys so much for your responses. It's nice to know others are fighting the same fight I am fighting. Here I am 5'11, 200lbs and i'm a pretty ripped up guy. I do all my crap right, take care of myself, diligent about care, etc. And yet I have this phantom problem causing me grief. I am cool with a problem if it doesn't impact my quality of life, but this does, and relationships have eroded due to it.


My previous anger that I could spike with and throw someone through a wall (who had it coming), now has no one i can throw through a wall. There is so reason, and no purpose. I follow the conventional approaches, I follow the alternative approaches. But in my search for what is causing the bleeds, im stopping all supplements. Something tells me I bleed anyways

Faust
10-21-2007, 01:03 AM
Thank you guys so much for your responses. It's nice to know others are fighting the same fight I am fighting. Here I am 5'11, 200lbs and i'm a pretty ripped up guy. I do all my crap right, take care of myself, diligent about care, etc. And yet I have this phantom problem causing me grief. I am cool with a problem if it doesn't impact my quality of life, but this does, and relationships have eroded due to it.


My previous anger that I could spike with and throw someone through a wall (who had it coming), now has no one i can throw through a wall. There is so reason, and no purpose. I follow the conventional approaches, I follow the alternative approaches. But in my search for what is causing the bleeds, im stopping all supplements. Something tells me I bleed anyways

Faust
10-21-2007, 01:03 AM
Thank you guys so much for your responses. It's nice to know others are fighting the same fight I am fighting. Here I am 5'11, 200lbs and i'm a pretty ripped up guy. I do all my crap right, take care of myself, diligent about care, etc. And yet I have this phantom problem causing me grief. I am cool with a problem if it doesn't impact my quality of life, but this does, and relationships have eroded due to it.


My previous anger that I could spike with and throw someone through a wall (who had it coming), now has no one i can throw through a wall. There is so reason, and no purpose. I follow the conventional approaches, I follow the alternative approaches. But in my search for what is causing the bleeds, im stopping all supplements. Something tells me I bleed anyways

Faust
10-21-2007, 01:03 AM
Thank you guys so much for your responses. It's nice to know others are fighting the same fight I am fighting. Here I am 5'11, 200lbs and i'm a pretty ripped up guy. I do all my crap right, take care of myself, diligent about care, etc. And yet I have this phantom problem causing me grief. I am cool with a problem if it doesn't impact my quality of life, but this does, and relationships have eroded due to it.


My previous anger that I could spike with and throw someone through a wall (who had it coming), now has no one i can throw through a wall. There is so reason, and no purpose. I follow the conventional approaches, I follow the alternative approaches. But in my search for what is causing the bleeds, im stopping all supplements. Something tells me I bleed anyways