Fevers???

C

Chels757

New member
I've been having these low grade fevers for about 4 months now. They range from 99.6-101
Back in May the infectious disease doctors found psueso in my blood and I was really sick. 104 fever and really weak. It seems like after that I started going down hill. I get these fevers about 4-5 days a week. My PFT's have declined from the high 60s to the mid to low 50s. The fevers do however GO AWAY when I am on IV antibiotics, but after a few days off of IV antibiotics they find there way back and I start feeling horrible again. It seemed like none of the doctors believed me until a few days ago. I came in through the er with a 103.5 fever. They admitted me and I am currently still here. They did a CT but couldn't find anything in paticular. They did say that my CT showed chronic changes from my last CT from CF. They are doing another test called a TEE or something like that where they put dye into me and after 24 hours take pictures to see where my white blood cells go and another picture after 48 hours to see if more white blood cells go there also. This will show where an infection might take place. If that doesn't show anything they want to put a scope down my throat to look at the valves of my heart to make sure I don't have an infection in my heart. The ID doctor doesn't think the fevers has to do with my CF since right now my cough isn't more than normal, but my x-ray did show pneumonia in my right lung. Not to mention I just got out of the hospital 3 weeks ago with pneumonia in my right lung but in a different spot. I don't know how much longer I can take these fevers and I'm scared I'm going to have to deal with them for the rest of my life. I feel like there is no light at the end of the tunnel and I'm going down hill fast. Has anyone else experienced this?



22, CF, diagnosed at 2, pseudo, cultured MAC and myco absc before
 
C

Chels757

New member
I've been having these low grade fevers for about 4 months now. They range from 99.6-101
Back in May the infectious disease doctors found psueso in my blood and I was really sick. 104 fever and really weak. It seems like after that I started going down hill. I get these fevers about 4-5 days a week. My PFT's have declined from the high 60s to the mid to low 50s. The fevers do however GO AWAY when I am on IV antibiotics, but after a few days off of IV antibiotics they find there way back and I start feeling horrible again. It seemed like none of the doctors believed me until a few days ago. I came in through the er with a 103.5 fever. They admitted me and I am currently still here. They did a CT but couldn't find anything in paticular. They did say that my CT showed chronic changes from my last CT from CF. They are doing another test called a TEE or something like that where they put dye into me and after 24 hours take pictures to see where my white blood cells go and another picture after 48 hours to see if more white blood cells go there also. This will show where an infection might take place. If that doesn't show anything they want to put a scope down my throat to look at the valves of my heart to make sure I don't have an infection in my heart. The ID doctor doesn't think the fevers has to do with my CF since right now my cough isn't more than normal, but my x-ray did show pneumonia in my right lung. Not to mention I just got out of the hospital 3 weeks ago with pneumonia in my right lung but in a different spot. I don't know how much longer I can take these fevers and I'm scared I'm going to have to deal with them for the rest of my life. I feel like there is no light at the end of the tunnel and I'm going down hill fast. Has anyone else experienced this?



22, CF, diagnosed at 2, pseudo, cultured MAC and myco absc before
 
C

Chels757

New member
I've been having these low grade fevers for about 4 months now. They range from 99.6-101
Back in May the infectious disease doctors found psueso in my blood and I was really sick. 104 fever and really weak. It seems like after that I started going down hill. I get these fevers about 4-5 days a week. My PFT's have declined from the high 60s to the mid to low 50s. The fevers do however GO AWAY when I am on IV antibiotics, but after a few days off of IV antibiotics they find there way back and I start feeling horrible again. It seemed like none of the doctors believed me until a few days ago. I came in through the er with a 103.5 fever. They admitted me and I am currently still here. They did a CT but couldn't find anything in paticular. They did say that my CT showed chronic changes from my last CT from CF. They are doing another test called a TEE or something like that where they put dye into me and after 24 hours take pictures to see where my white blood cells go and another picture after 48 hours to see if more white blood cells go there also. This will show where an infection might take place. If that doesn't show anything they want to put a scope down my throat to look at the valves of my heart to make sure I don't have an infection in my heart. The ID doctor doesn't think the fevers has to do with my CF since right now my cough isn't more than normal, but my x-ray did show pneumonia in my right lung. Not to mention I just got out of the hospital 3 weeks ago with pneumonia in my right lung but in a different spot. I don't know how much longer I can take these fevers and I'm scared I'm going to have to deal with them for the rest of my life. I feel like there is no light at the end of the tunnel and I'm going down hill fast. Has anyone else experienced this?



22, CF, diagnosed at 2, pseudo, cultured MAC and myco absc before
 
J

jamest

Guest
Having fevers over the long term can be really debilitating, not to mention discouraging. I had a long term fever that only responded to prednisone - after a lot of back and forth, it turned out to be caused by aspergillus in my sinuses, which required surgery.

The thing that I learned is that the fever was just that, and not necessarily a sign of something being wrong. At first, I was scared that I was going to be sick like that forever. But after a while, I got sick of laying around and just started doing things, even when feverish. I don't think my situation is medically similar to yours, but I learned that I was adaptable enough to change my life around something that I thought I wouldn't be able to deal with.
 
J

jamest

Guest
Having fevers over the long term can be really debilitating, not to mention discouraging. I had a long term fever that only responded to prednisone - after a lot of back and forth, it turned out to be caused by aspergillus in my sinuses, which required surgery.

The thing that I learned is that the fever was just that, and not necessarily a sign of something being wrong. At first, I was scared that I was going to be sick like that forever. But after a while, I got sick of laying around and just started doing things, even when feverish. I don't think my situation is medically similar to yours, but I learned that I was adaptable enough to change my life around something that I thought I wouldn't be able to deal with.
 
J

jamest

Guest
Having fevers over the long term can be really debilitating, not to mention discouraging. I had a long term fever that only responded to prednisone - after a lot of back and forth, it turned out to be caused by aspergillus in my sinuses, which required surgery.
<br />
<br />The thing that I learned is that the fever was just that, and not necessarily a sign of something being wrong. At first, I was scared that I was going to be sick like that forever. But after a while, I got sick of laying around and just started doing things, even when feverish. I don't think my situation is medically similar to yours, but I learned that I was adaptable enough to change my life around something that I thought I wouldn't be able to deal with.
 
J

Jana

New member
Sorry to hear you're having such a rough time! From some other posts on here, it seems that low-grade fevers among those of us with cf is fairly typical. I know I've gone through years when I had them almost all the time. Right now, I don't, but it wasn't like anyone figured out a way to resolve it--it seems random. I always just thought it was me until reading that a lot of other people on here have the same issue. As James said, you eventually learn to deal with it and go on.

It sounds like you have a lot going on now, though, so I'm glad they're looking to see what's going on. It's certainly not a good idea to ignore it if there's a major problem brewing.

Hope you feel better soon!
 
J

Jana

New member
Sorry to hear you're having such a rough time! From some other posts on here, it seems that low-grade fevers among those of us with cf is fairly typical. I know I've gone through years when I had them almost all the time. Right now, I don't, but it wasn't like anyone figured out a way to resolve it--it seems random. I always just thought it was me until reading that a lot of other people on here have the same issue. As James said, you eventually learn to deal with it and go on.

It sounds like you have a lot going on now, though, so I'm glad they're looking to see what's going on. It's certainly not a good idea to ignore it if there's a major problem brewing.

Hope you feel better soon!
 
J

Jana

New member
Sorry to hear you're having such a rough time! From some other posts on here, it seems that low-grade fevers among those of us with cf is fairly typical. I know I've gone through years when I had them almost all the time. Right now, I don't, but it wasn't like anyone figured out a way to resolve it--it seems random. I always just thought it was me until reading that a lot of other people on here have the same issue. As James said, you eventually learn to deal with it and go on.
<br />
<br />It sounds like you have a lot going on now, though, so I'm glad they're looking to see what's going on. It's certainly not a good idea to ignore it if there's a major problem brewing.
<br />
<br />Hope you feel better soon!
 
M

mah

Guest
 A few years ago, (in my mid-20s), I started having fevers 4-5 days a week. I just learned to live with them...they are and were caused by a combo of PNA & inflammation. It is very difficult. I tried to increase my activity little by little and now the fevers aren't nearly as debilitating. I am only allowed to stay in bed if fever is >101.  Hang in there. Keep fighting. I promise you there will be moments that are worth the fighting, and they will be nothing like what you would've expected. 
 
M

mah

Guest
A few years ago, (in my mid-20s), I started having fevers 4-5 days a week. I just learned to live with them...they are and were caused by a combo of PNA & inflammation. It is very difficult. I tried to increase my activity little by little and now the fevers aren't nearly as debilitating. I am only allowed to stay in bed if fever is >101. Hang in there. Keep fighting. I promise you there will be moments that are worth the fighting, and they will be nothing like what you would've expected.
 
M

mah

Guest
A few years ago, (in my mid-20s), I started having fevers 4-5 days a week. I just learned to live with them...they are and were caused by a combo of PNA & inflammation. It is very difficult. I tried to increase my activity little by little and now the fevers aren't nearly as debilitating. I am only allowed to stay in bed if fever is >101. Hang in there. Keep fighting. I promise you there will be moments that are worth the fighting, and they will be nothing like what you would've expected.
 
C

CysticlyFIT

New member
Hi there,

I have had these weird fevers problem also, around Jan last year, ( 2010 ) low grade, 99.0-100.0- - I'd be put on an oral Abx, 3 days later when im done with abx, the crap grows back, and you start feeling bad again, another round oral abx, same thing, -next resort IV's, then it knock it out, and pissed off -outta my lungs. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Ever since I keep up with vigorous exercise, seem to have avoid it, however, I did a round of bactrim when my FEV1 clunked at 78 % when my normal was 83 % , did that for 14 x and days later after 3 days green garbage and yep... low grade fever..99.1 fever...Next doxy....that killed it, I survived more then 7 days after finishing.... but then I was due for my tune up anyway the next week and by that time green was back but no fever creeped up.

Long story short,... they need to find what growing in there, Have you had a broncoscpy lately ? They sedate you, suck up everything in the lungs, and send it for biopsy....

Perhaps its the MAC acting up?

Keep moving around, and light exercise boost your immune system..yes even when you feel crap.


I hope you find answers.... xo
 
C

CysticlyFIT

New member
Hi there,

I have had these weird fevers problem also, around Jan last year, ( 2010 ) low grade, 99.0-100.0- - I'd be put on an oral Abx, 3 days later when im done with abx, the crap grows back, and you start feeling bad again, another round oral abx, same thing, -next resort IV's, then it knock it out, and pissed off -outta my lungs. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Ever since I keep up with vigorous exercise, seem to have avoid it, however, I did a round of bactrim when my FEV1 clunked at 78 % when my normal was 83 % , did that for 14 x and days later after 3 days green garbage and yep... low grade fever..99.1 fever...Next doxy....that killed it, I survived more then 7 days after finishing.... but then I was due for my tune up anyway the next week and by that time green was back but no fever creeped up.

Long story short,... they need to find what growing in there, Have you had a broncoscpy lately ? They sedate you, suck up everything in the lungs, and send it for biopsy....

Perhaps its the MAC acting up?

Keep moving around, and light exercise boost your immune system..yes even when you feel crap.


I hope you find answers.... xo
 
C

CysticlyFIT

New member
Hi there,
<br />
<br />I have had these weird fevers problem also, around Jan last year, ( 2010 ) low grade, 99.0-100.0- - I'd be put on an oral Abx, 3 days later when im done with abx, the crap grows back, and you start feeling bad again, another round oral abx, same thing, -next resort IV's, then it knock it out, and pissed off -outta my lungs. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />Ever since I keep up with vigorous exercise, seem to have avoid it, however, I did a round of bactrim when my FEV1 clunked at 78 % when my normal was 83 % , did that for 14 x and days later after 3 days green garbage and yep... low grade fever..99.1 fever...Next doxy....that killed it, I survived more then 7 days after finishing.... but then I was due for my tune up anyway the next week and by that time green was back but no fever creeped up.
<br />
<br />Long story short,... they need to find what growing in there, Have you had a broncoscpy lately ? They sedate you, suck up everything in the lungs, and send it for biopsy....
<br />
<br />Perhaps its the MAC acting up?
<br />
<br />Keep moving around, and light exercise boost your immune system..yes even when you feel crap.
<br />
<br />
<br />I hope you find answers.... xo
<br />
<br />
<br />
<br />
 
M

MattNAdriannasMommy

New member
Just think of it like this....fever is usually a sign of infection....with CF your body is constantly fighting an infection. I had a friend translate it like this-

You have an ant problem- a fever lets you know you have this "ant" problem. So you call pest control and they treat for it (the antibiotics). Immediately the problem is solved and the ants are no longer a problem, but a few days later you realized, you still have ants and you decide they will always be there, but just not the whole colony.

I live feverish and the best thing I can tell you to do, and this may sound dumb- is when you start to feel feverish drink a glass of water. A lot of times fevers can be a sign of dehydration and with CF and all the mucus its even harder to stay hydrated. So, just try to drink a glass of water every hr or so and you may be surprised bc I know that the constant fever thing sucks. It was a big problem for me in high school and that caused an even bigger problem bc if I had a fever, I would get sent home.

Good luck!
 
M

MattNAdriannasMommy

New member
Just think of it like this....fever is usually a sign of infection....with CF your body is constantly fighting an infection. I had a friend translate it like this-

You have an ant problem- a fever lets you know you have this "ant" problem. So you call pest control and they treat for it (the antibiotics). Immediately the problem is solved and the ants are no longer a problem, but a few days later you realized, you still have ants and you decide they will always be there, but just not the whole colony.

I live feverish and the best thing I can tell you to do, and this may sound dumb- is when you start to feel feverish drink a glass of water. A lot of times fevers can be a sign of dehydration and with CF and all the mucus its even harder to stay hydrated. So, just try to drink a glass of water every hr or so and you may be surprised bc I know that the constant fever thing sucks. It was a big problem for me in high school and that caused an even bigger problem bc if I had a fever, I would get sent home.

Good luck!
 
M

MattNAdriannasMommy

New member
Just think of it like this....fever is usually a sign of infection....with CF your body is constantly fighting an infection. I had a friend translate it like this-
<br />
<br />You have an ant problem- a fever lets you know you have this "ant" problem. So you call pest control and they treat for it (the antibiotics). Immediately the problem is solved and the ants are no longer a problem, but a few days later you realized, you still have ants and you decide they will always be there, but just not the whole colony.
<br />
<br />I live feverish and the best thing I can tell you to do, and this may sound dumb- is when you start to feel feverish drink a glass of water. A lot of times fevers can be a sign of dehydration and with CF and all the mucus its even harder to stay hydrated. So, just try to drink a glass of water every hr or so and you may be surprised bc I know that the constant fever thing sucks. It was a big problem for me in high school and that caused an even bigger problem bc if I had a fever, I would get sent home.
<br />
<br />Good luck!
 
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