What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

question about mycobacterium...

T

TonyaH

Guest
Andrew went in Tuesday for a baseline CT scan to evaluate this new mycobacterium abscessus he is culturing and to hopefully have his picc removed. Unfortunately, the myco looks like it is spread throughout his lungs, so we have to keep the picc and treat the myco as soon as sensitivities are back. My question for those of you who have cultured myco is regarding hemoptysis. Andrew coughs up blood once in awhile Not frequently, but usually around an exacerbation. Is this a problem with mycos? For those of you prone to hemoptysis, did you notice more of it while culturing mycobacterium?

And I guess while I'm asking questions, I'll also ask you how quickly your CT scans showed infiltration after culturing your myco. I guess I was suprised that he just cultured it three weeks ago and already has what our nurse called an 'impressive' CT scan. Makes me wonder how long it has been down there, you know?
 
T

TonyaH

Guest
Andrew went in Tuesday for a baseline CT scan to evaluate this new mycobacterium abscessus he is culturing and to hopefully have his picc removed. Unfortunately, the myco looks like it is spread throughout his lungs, so we have to keep the picc and treat the myco as soon as sensitivities are back. My question for those of you who have cultured myco is regarding hemoptysis. Andrew coughs up blood once in awhile Not frequently, but usually around an exacerbation. Is this a problem with mycos? For those of you prone to hemoptysis, did you notice more of it while culturing mycobacterium?

And I guess while I'm asking questions, I'll also ask you how quickly your CT scans showed infiltration after culturing your myco. I guess I was suprised that he just cultured it three weeks ago and already has what our nurse called an 'impressive' CT scan. Makes me wonder how long it has been down there, you know?
 
T

TonyaH

Guest
Andrew went in Tuesday for a baseline CT scan to evaluate this new mycobacterium abscessus he is culturing and to hopefully have his picc removed. Unfortunately, the myco looks like it is spread throughout his lungs, so we have to keep the picc and treat the myco as soon as sensitivities are back. My question for those of you who have cultured myco is regarding hemoptysis. Andrew coughs up blood once in awhile Not frequently, but usually around an exacerbation. Is this a problem with mycos? For those of you prone to hemoptysis, did you notice more of it while culturing mycobacterium?
<br />
<br />And I guess while I'm asking questions, I'll also ask you how quickly your CT scans showed infiltration after culturing your myco. I guess I was suprised that he just cultured it three weeks ago and already has what our nurse called an 'impressive' CT scan. Makes me wonder how long it has been down there, you know?
 
T

theLostMiler

New member
As far as hemoptysis goes, I was culturing NTM (cant remember if it was with my M.A. or M. Clelonae) when I had my first real experience with it. Ever since then I noticed that sometimes at night when I would lay down (the pressure changes) I would cough up pure blood again. And more often, I would cough up the week before my period along with a fever for about 6 months (obviously you wont have that) and this was actually a time when I wasnt culturing M.A. after a sucessful iv treatment. I havent coughed up pure blood for a while and it was when I was on cefoxitin which works by destroying the vit. k or something makes you prone to bleeding. I do often cough up streaks, and that is concurrent mostly with my bacterias flaring up (either the M.A. or the b. cep).

As far as the CT scan, I was dx'ed with NTM in December of 2006 but for like 6 months at least, my cultures hadnt been checked for any AFBs, so to me, there was a possibility it was there that long at least. I had the circles in my lungs in that first CT scan (they say that NTM has like these rings or circles and thats one way they check to see if its NTM or something like that).

The AFBs take FOREVER to grow, so to me, maybe there is a possibilty is has been in there but either not enough to culture (b/c other bugs could have crowded it out on the plate) or just b/c it takes forever they may have missed it possibly?

I am so sorry Andrew has to grow through all this... Any new bug is so scary and defeating feeling... (I bawled when they said b. cep showed up).
 
T

theLostMiler

New member
As far as hemoptysis goes, I was culturing NTM (cant remember if it was with my M.A. or M. Clelonae) when I had my first real experience with it. Ever since then I noticed that sometimes at night when I would lay down (the pressure changes) I would cough up pure blood again. And more often, I would cough up the week before my period along with a fever for about 6 months (obviously you wont have that) and this was actually a time when I wasnt culturing M.A. after a sucessful iv treatment. I havent coughed up pure blood for a while and it was when I was on cefoxitin which works by destroying the vit. k or something makes you prone to bleeding. I do often cough up streaks, and that is concurrent mostly with my bacterias flaring up (either the M.A. or the b. cep).

As far as the CT scan, I was dx'ed with NTM in December of 2006 but for like 6 months at least, my cultures hadnt been checked for any AFBs, so to me, there was a possibility it was there that long at least. I had the circles in my lungs in that first CT scan (they say that NTM has like these rings or circles and thats one way they check to see if its NTM or something like that).

The AFBs take FOREVER to grow, so to me, maybe there is a possibilty is has been in there but either not enough to culture (b/c other bugs could have crowded it out on the plate) or just b/c it takes forever they may have missed it possibly?

I am so sorry Andrew has to grow through all this... Any new bug is so scary and defeating feeling... (I bawled when they said b. cep showed up).
 
T

theLostMiler

New member
As far as hemoptysis goes, I was culturing NTM (cant remember if it was with my M.A. or M. Clelonae) when I had my first real experience with it. Ever since then I noticed that sometimes at night when I would lay down (the pressure changes) I would cough up pure blood again. And more often, I would cough up the week before my period along with a fever for about 6 months (obviously you wont have that) and this was actually a time when I wasnt culturing M.A. after a sucessful iv treatment. I havent coughed up pure blood for a while and it was when I was on cefoxitin which works by destroying the vit. k or something makes you prone to bleeding. I do often cough up streaks, and that is concurrent mostly with my bacterias flaring up (either the M.A. or the b. cep).
<br />
<br />As far as the CT scan, I was dx'ed with NTM in December of 2006 but for like 6 months at least, my cultures hadnt been checked for any AFBs, so to me, there was a possibility it was there that long at least. I had the circles in my lungs in that first CT scan (they say that NTM has like these rings or circles and thats one way they check to see if its NTM or something like that).
<br />
<br />The AFBs take FOREVER to grow, so to me, maybe there is a possibilty is has been in there but either not enough to culture (b/c other bugs could have crowded it out on the plate) or just b/c it takes forever they may have missed it possibly?
<br />
<br />I am so sorry Andrew has to grow through all this... Any new bug is so scary and defeating feeling... (I bawled when they said b. cep showed up).
 
J

Jane

Digital opinion leader
Josh had his hemoptysis around the same time as the NTM was observed, but we are not sure of the connection. The NTM has been gone now for several years and he still has bleeds a few times a year.

The boys' CT scans showed changes "branches" almost right away.

On a good note, after 6 months of IV therapy the damage was reduced by 80%!!!

It is so scary to face this on top of everything else we deal with. It is good they are being aggressive with it. Good luck!
 
J

Jane

Digital opinion leader
Josh had his hemoptysis around the same time as the NTM was observed, but we are not sure of the connection. The NTM has been gone now for several years and he still has bleeds a few times a year.

The boys' CT scans showed changes "branches" almost right away.

On a good note, after 6 months of IV therapy the damage was reduced by 80%!!!

It is so scary to face this on top of everything else we deal with. It is good they are being aggressive with it. Good luck!
 
J

Jane

Digital opinion leader
Josh had his hemoptysis around the same time as the NTM was observed, but we are not sure of the connection. The NTM has been gone now for several years and he still has bleeds a few times a year.
<br />
<br />The boys' CT scans showed changes "branches" almost right away.
<br />
<br />On a good note, after 6 months of IV therapy the damage was reduced by 80%!!!
<br />
<br />It is so scary to face this on top of everything else we deal with. It is good they are being aggressive with it. Good luck!
 
L

LouLou

New member
With regards to how long he actually had it. Do you know when his last AFB culture was prior to the one 3 wks ago? It's an extra test that has to be ordered on a sputum culture that is highly accurate for finding myco's. I get one every 6 months or more often as is the case this last year we have been dealing with strange drops in my pfts.

Sorry he has it. Will your doctor consult with Denver?
 
L

LouLou

New member
With regards to how long he actually had it. Do you know when his last AFB culture was prior to the one 3 wks ago? It's an extra test that has to be ordered on a sputum culture that is highly accurate for finding myco's. I get one every 6 months or more often as is the case this last year we have been dealing with strange drops in my pfts.

Sorry he has it. Will your doctor consult with Denver?
 
L

LouLou

New member
With regards to how long he actually had it. Do you know when his last AFB culture was prior to the one 3 wks ago? It's an extra test that has to be ordered on a sputum culture that is highly accurate for finding myco's. I get one every 6 months or more often as is the case this last year we have been dealing with strange drops in my pfts.
<br />
<br />Sorry he has it. Will your doctor consult with Denver?
 
T

TonyaH

Guest
Thanks everyone,
I guess I'll just keep an eye for any signs of hemoptysis and remind him of that 'feeling' he gets before it happens just in case. Andrew's CT scan is showing many nodules throughout his lungs and lots of tree in bud growth, so it sounds like it has been there awhile. LouLou, I'm not sure how long it had been since he had had an afb culture, but now I wonder if they will automatically order one every time he is cultured. As always, your experience is very helpful. ?
 
T

TonyaH

Guest
Thanks everyone,
I guess I'll just keep an eye for any signs of hemoptysis and remind him of that 'feeling' he gets before it happens just in case. Andrew's CT scan is showing many nodules throughout his lungs and lots of tree in bud growth, so it sounds like it has been there awhile. LouLou, I'm not sure how long it had been since he had had an afb culture, but now I wonder if they will automatically order one every time he is cultured. As always, your experience is very helpful. ?
 
T

TonyaH

Guest
Thanks everyone,
<br />I guess I'll just keep an eye for any signs of hemoptysis and remind him of that 'feeling' he gets before it happens just in case. Andrew's CT scan is showing many nodules throughout his lungs and lots of tree in bud growth, so it sounds like it has been there awhile. LouLou, I'm not sure how long it had been since he had had an afb culture, but now I wonder if they will automatically order one every time he is cultured. As always, your experience is very helpful. ?
 
T

theLostMiler

New member
Tonya,

In my response that was what happened to me, the not testing for AFB, like LouLou said, it is a different process and my ped doctor was way pissed off when she found out that the lab hadnt been following her orders. It sounded like her protocol was to always do a test for it in everyones cultures and it hadnt been getting done in all her patients.

I would hope that the doctors would always test for this until you have the 2 years of negative cultures, at least. I am always tested for AFB b/c I havent been able to get rid of the it.

Do you know what strenght of CT scan he had? Was it normal or high? I had the High one done on accident once and my CF doctor told me that my lungs looked worse than they thought and that I was a good liar or just didnt complain much (though I complain a lot lol). The high one really showed them my the 'cysts' I had in my lungs I guess.

The worst part is waiting for the sensativies, since it takes 6+ weeks... but if they get it right, it can work wonders. Also, cant remember if I asked or not, but does he have and Infectious Disease doctor on his team now?
 
T

theLostMiler

New member
Tonya,

In my response that was what happened to me, the not testing for AFB, like LouLou said, it is a different process and my ped doctor was way pissed off when she found out that the lab hadnt been following her orders. It sounded like her protocol was to always do a test for it in everyones cultures and it hadnt been getting done in all her patients.

I would hope that the doctors would always test for this until you have the 2 years of negative cultures, at least. I am always tested for AFB b/c I havent been able to get rid of the it.

Do you know what strenght of CT scan he had? Was it normal or high? I had the High one done on accident once and my CF doctor told me that my lungs looked worse than they thought and that I was a good liar or just didnt complain much (though I complain a lot lol). The high one really showed them my the 'cysts' I had in my lungs I guess.

The worst part is waiting for the sensativies, since it takes 6+ weeks... but if they get it right, it can work wonders. Also, cant remember if I asked or not, but does he have and Infectious Disease doctor on his team now?
 
T

theLostMiler

New member
Tonya,
<br />
<br />In my response that was what happened to me, the not testing for AFB, like LouLou said, it is a different process and my ped doctor was way pissed off when she found out that the lab hadnt been following her orders. It sounded like her protocol was to always do a test for it in everyones cultures and it hadnt been getting done in all her patients.
<br />
<br />I would hope that the doctors would always test for this until you have the 2 years of negative cultures, at least. I am always tested for AFB b/c I havent been able to get rid of the it.
<br />
<br />Do you know what strenght of CT scan he had? Was it normal or high? I had the High one done on accident once and my CF doctor told me that my lungs looked worse than they thought and that I was a good liar or just didnt complain much (though I complain a lot lol). The high one really showed them my the 'cysts' I had in my lungs I guess.
<br />
<br />The worst part is waiting for the sensativies, since it takes 6+ weeks... but if they get it right, it can work wonders. Also, cant remember if I asked or not, but does he have and Infectious Disease doctor on his team now?
 
You must log in or register to reply here.
Top