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Feeling bad more times than good
- Thread starter Giggles
- Start date
Hi Havok....I guess a zillion things happening at the same time led to my decline. At the time I was running 3 miles a day, I was still getting sick and wound up in the hospital 3 or 4 times a year for respiratory related problems the docs chalked up to either asthma or bronchitis/pneumonia. The thing is, I bounced back though after I was treated and my lung functions were sitting at around 80 ish. Things started to get really messy when my diaphragm weakened rapidly to the point of hindering my breathing effort tremendously. Docs have many theories as to why this happened ranging from viral infection to myopathy...At this point, I was still without a CF dx, but my respiratory status spiraled out of control. I could not go up a flight of stairs without feeling like I was dying and dropping my sats into the 70's. Because I was so weakened, the infections came on back to back.....I could not clear my secretions so they sat in my lungs creating the perfect breeding ground for bacterial invasion.
I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
Jenn 39 w/CF
I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
Jenn 39 w/CF
Hi Havok....I guess a zillion things happening at the same time led to my decline. At the time I was running 3 miles a day, I was still getting sick and wound up in the hospital 3 or 4 times a year for respiratory related problems the docs chalked up to either asthma or bronchitis/pneumonia. The thing is, I bounced back though after I was treated and my lung functions were sitting at around 80 ish. Things started to get really messy when my diaphragm weakened rapidly to the point of hindering my breathing effort tremendously. Docs have many theories as to why this happened ranging from viral infection to myopathy...At this point, I was still without a CF dx, but my respiratory status spiraled out of control. I could not go up a flight of stairs without feeling like I was dying and dropping my sats into the 70's. Because I was so weakened, the infections came on back to back.....I could not clear my secretions so they sat in my lungs creating the perfect breeding ground for bacterial invasion.
I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
Jenn 39 w/CF
I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
Jenn 39 w/CF
Hi Havok....I guess a zillion things happening at the same time led to my decline. At the time I was running 3 miles a day, I was still getting sick and wound up in the hospital 3 or 4 times a year for respiratory related problems the docs chalked up to either asthma or bronchitis/pneumonia. The thing is, I bounced back though after I was treated and my lung functions were sitting at around 80 ish. Things started to get really messy when my diaphragm weakened rapidly to the point of hindering my breathing effort tremendously. Docs have many theories as to why this happened ranging from viral infection to myopathy...At this point, I was still without a CF dx, but my respiratory status spiraled out of control. I could not go up a flight of stairs without feeling like I was dying and dropping my sats into the 70's. Because I was so weakened, the infections came on back to back.....I could not clear my secretions so they sat in my lungs creating the perfect breeding ground for bacterial invasion.
<br />
<br />I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
<br />
<br />I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
<br />
<br />I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
<br />
<br />I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
<br />
<br />Jenn 39 w/CF
<br />
<br />I did ultimately wind up on the vent and trached because Bi Pap was ineffective, this was nearly 8 years ago. It was then that the docs finally cultured me (I had never had any sputum cultures prior to this, they would just treat me empirically with broad spectrum antibiotics, I would get better and be sent on my merry way) and found PA, B. cepacia and Staph. When I was vented, my FEV was in the teens, a good part of it because I simply could not force the air out of my lungs, I was that weak.
<br />
<br />I have since gotten stronger, I am still on the vent half of the day but at least I can come off with O2. My FEV is 35-38 now, some of it is because of my diaphragm, but a good part of it is because of the obstructive component of my CF (from what my pulmo says). Because I have a trach, it does complicate things, I am more prone to infections but I have to say, my trach has saved me several times over. I easily go from stable to unstable extremely quickly these days and without too much warning.
<br />
<br />I don't know if my CF would have been diagnosed if I didn't have the issues with my diaphragm...it was actually an incidental type of diagnosis. I probably would have kept having progressive issues with my "asthma" and frequent infections. My respiratory decline would not have been as sharp as it has been over these last 8 or so years, perhaps I would have finally gotten a diagnosis in my late 40's instead had I not had these other complications to throw things in fast forward. Who knows...perhaps a whammy of an infection would have tanked my PFT's instead of a gradual decline. I guess with CF, you just never know....All I know is what is happening to me now and how dramatically it has changed my life. The treatments have helped as far as bronchospasm and keeping some of those colonies at bay (Colistin, HTS, duonebs, pulmicort, pulmozyme, vesting etc...) I think I would be worse off without them.
<br />
<br />I hope I answered your questions <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to ask more if you like.
<br />
<br />Jenn 39 w/CF
B
BikerEd
Guest
Okay I'm 30 going to be 40 in March, and yes I feel that I can't do everything that I used to, and sometimes it scares the (censored) out of me. Then I think of this line from a song "What a drag it is getting old" ~ Mother's Little Helper - Rolling Stones. Now that is honestly meant as a joke, I have friends that will say "Dude, I did something to by back it's been killing me for three days" and I sing the previously quoted line.
I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
Ed
I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
Ed
B
BikerEd
Guest
Okay I'm 30 going to be 40 in March, and yes I feel that I can't do everything that I used to, and sometimes it scares the (censored) out of me. Then I think of this line from a song "What a drag it is getting old" ~ Mother's Little Helper - Rolling Stones. Now that is honestly meant as a joke, I have friends that will say "Dude, I did something to by back it's been killing me for three days" and I sing the previously quoted line.
I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
Ed
I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
Ed
B
BikerEd
Guest
Okay I'm 30 going to be 40 in March, and yes I feel that I can't do everything that I used to, and sometimes it scares the (censored) out of me. Then I think of this line from a song "What a drag it is getting old" ~ Mother's Little Helper - Rolling Stones. Now that is honestly meant as a joke, I have friends that will say "Dude, I did something to by back it's been killing me for three days" and I sing the previously quoted line.
<br />
<br />I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
<br />
<br />I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
<br />
<br />Ed
<br />
<br />
<br />I climb ladders and scaffolds for a living; I walk miles on end it seems like in my job. And I've noticed it's not as easy anymore I find myself taking more breaks. We (my family and I) love amusement parks, this year was the first time I noticed I was not leading the pack but rather sitting down taking breaks while walking. It bugs me to no end. Now I do have anemia, and I notice when I don't eat red meat or iron rich foods (I am on a ridiculous high eat everything diet) I am more tired (Iron pills agitates an already angry digestive system). So most certainly get that checked. I also look at it as like an aging warrior, your knees start to hurt or your shoulder takes longer to heal but you can still fight, and what my wife and I have been discussing what is the next step. For me Working is just something I feel I must do, I've done it since I was 13, and as long as I can learn I do something than I can always do something. To translate this for you, ok you can't make it to the gym 5 days a week and walking 3 days a week is getting blah. Can you do those "At your desk" exercises I always see my company e-mail to our office people? Maybe not all of them but maybe a couple. Dinner for your husband, can you make "reservations"? Okay that was a joke. I have found tons of 30 minute prep recipes that you could maybe prep throughout the day and start cooking when you need to, i.e. when you want to eat.
<br />
<br />I DO understand what you are feeling; I can relate to it on sooo many levels. I am sending you all the encouragement I got. But as a fellow 39 going on 40 CF DX at 5weeks, sounds like the same history as yours, I would not be arrogant enough to tell what to do, but rather share what worked for me, and make some recommendations. All the best Jen.
<br />
<br />Ed
<br />
azdesertrat
New member
Hey Jenifer!
Are you feeling any better?
I haven't heard much from you since thos post & was wondering.
Hope you're better...
Keep on keepin' on Girl!
Are you feeling any better?
I haven't heard much from you since thos post & was wondering.
Hope you're better...
Keep on keepin' on Girl!
azdesertrat
New member
Hey Jenifer!
Are you feeling any better?
I haven't heard much from you since thos post & was wondering.
Hope you're better...
Keep on keepin' on Girl!
Are you feeling any better?
I haven't heard much from you since thos post & was wondering.
Hope you're better...
Keep on keepin' on Girl!
azdesertrat
New member
Hey Jenifer!
<br />Are you feeling any better?
<br />I haven't heard much from you since thos post & was wondering.
<br />Hope you're better...
<br />Keep on keepin' on Girl!
<br />Are you feeling any better?
<br />I haven't heard much from you since thos post & was wondering.
<br />Hope you're better...
<br />Keep on keepin' on Girl!
S
stephen
Guest
Giggles,
Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
So your problem could be MAC. It should be ruled out.
Wishing you all the best,
Stephen, 69 years old with CF
Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
So your problem could be MAC. It should be ruled out.
Wishing you all the best,
Stephen, 69 years old with CF
S
stephen
Guest
Giggles,
Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
So your problem could be MAC. It should be ruled out.
Wishing you all the best,
Stephen, 69 years old with CF
Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
So your problem could be MAC. It should be ruled out.
Wishing you all the best,
Stephen, 69 years old with CF
S
stephen
Guest
Giggles,
<br />
<br />Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
<br />
<br />Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
<br />
<br />After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
<br />
<br />Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
<br />
<br />So your problem could be MAC. It should be ruled out.
<br />
<br />Wishing you all the best,
<br />Stephen, 69 years old with CF
<br />
<br />
<br />Ldude916 is correct. MAC (mycobacterium avium complex) can be difficult to detect in sputum.
<br />
<br />Twenty years ago at the age of 49, and before being diagnosed with CF, I was running almost constant low grade fevers. MAC was only detected by culturing samples taken during 2 Bronchoscopes. Culturing sputum that I coughed up was always negative.
<br />
<br />After a few weeks on Bactrim and Myambutol, I was fever free. I continued on the antibiotics for 18 months. Following the treatment, I was coughed free for the first time in my life. It was only then that I realized that mucus was not supposed to be green. This lasted for several years until pseudomonas set in. That's when the diagnosis of CF was finally made with genetic testing.
<br />
<br />Since then TOBI, Cayston, Pylmozyme, etc., have been quite effective in controlling my condition and the MAC has never returned, thank G-d.
<br />
<br />So your problem could be MAC. It should be ruled out.
<br />
<br />Wishing you all the best,
<br />Stephen, 69 years old with CF
<br />