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classified lung disease
- Thread starter anonymous
- Start date
Emily65Roses
New member
There's no real "clear cut" number that describes good lung condition, mild disease, moderate, severe, etc. But you can kind of guess. 100% is really good lung condition. 80ish is mild. 50-60ish is moderate. And severe, I guess could be classified by where they start looking to get you a transplant, and that's when you get to and stay at 30% lung function. Mind you, this is all just my general way of looking at it.
This is how my doctor explains to me, in which I agree with. He places severe, moderate, and mild on how clinically dependent you are. Meaning: if only have to do a therapy a few days a week or something than you are mild, plus only taking a few enzymes.
moderate: you are required to do more therapies and have more medications. The obviously if you are severe you are very dependent on therapys and medications.
To me that makes more sense then what your lung function is. If you have a lung disease, you have one. And then you can break it up further and say you do all your therapys and everything you can and you have 100% lung function, but you are still severe because you have to do 2-3 therapys/day and have many medications. You may have a 100% lung function and look pretty normal but you still have a lung disease.
I would me mild if I had a cough and only had to do my therapys when I had a cold or something. I think many patients are severe, and I think their is a lot of gray area of not understanding or knowing. They say that all the time, re: certain genes that are worse than others and they don't know why.
Tessa w/cf
moderate: you are required to do more therapies and have more medications. The obviously if you are severe you are very dependent on therapys and medications.
To me that makes more sense then what your lung function is. If you have a lung disease, you have one. And then you can break it up further and say you do all your therapys and everything you can and you have 100% lung function, but you are still severe because you have to do 2-3 therapys/day and have many medications. You may have a 100% lung function and look pretty normal but you still have a lung disease.
I would me mild if I had a cough and only had to do my therapys when I had a cold or something. I think many patients are severe, and I think their is a lot of gray area of not understanding or knowing. They say that all the time, re: certain genes that are worse than others and they don't know why.
Tessa w/cf
I think it would be easier to follow your PFTs if you are really looking to "classify" your severeness. My Doctors have always stressed the importance of doing my meds and treatments as prescribed, whether I feel like I need it or not. It was explained to me that treatments are done proactively, I should always do airway clearance, (even if I wake up feeling like I don't need to cough anything up) because there may in fact be mucus that needs to be moved around and worked out. And since our mucus is a breeding ground for bacteria that other people's lungs are not suseptible to, we should be working it out of there. And, in my experience, getting into the habit of doing treatments (whether you feel like you need to or not) will make it just another part of your day...like brushing your teeth. I think this routine is especially helpful for those rebellious pre-teen years, when CF can be hard to deal with, and you may not feel like doing yout meds!
I have what I guess is considered "normal" lung function (in the 80s), and was often above 100 in my younger years. However, I ALWAYS did my treatments, and I don't consider myself "clinically dependent". I lead a very normal life, I just have to do the vest and other meds that people with CF don't have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have what I guess is considered "normal" lung function (in the 80s), and was often above 100 in my younger years. However, I ALWAYS did my treatments, and I don't consider myself "clinically dependent". I lead a very normal life, I just have to do the vest and other meds that people with CF don't have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
L
luke
Guest
last time I worked in the PFT lab the classifications for FEV1 and FVC were....
100-80 normal
79-67 mild
65-55 moderate
<55 severe
luke
100-80 normal
79-67 mild
65-55 moderate
<55 severe
luke
I have always understood that by doing your treatments and vest ,even if you didn't feel sick, was to help keep the bacteria from staying down in the lungs and would make it easier to bring them up. I was also told that by taking good care of yourself and following treatment regimen that hopefully there would be less infection and hospitalizations which hopefully in return would mean higher and longer lung function. I have never heard that one being dependant on CF meds and treatments meant that their case with CF was severe, i would tend to think that one that does do treatments and by taking better care of themselves would have better lung fuctions and reduced illnesses.
My daughter is 9 years old and does her treatments 3-4 times daily and takes her meds as presrcribed, she has been hospitalized 4 times including birth, this may seem like alot but she has a friend that has CF and is the same age and she is very sick alot.
I have also understood that CF affects everyone differently, and knowing that alone is enough for us to follow our treatment regimen and pray that Kaits precious little lungs stay as healthy as can be for as long as they can.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
My daughter is 9 years old and does her treatments 3-4 times daily and takes her meds as presrcribed, she has been hospitalized 4 times including birth, this may seem like alot but she has a friend that has CF and is the same age and she is very sick alot.
I have also understood that CF affects everyone differently, and knowing that alone is enough for us to follow our treatment regimen and pray that Kaits precious little lungs stay as healthy as can be for as long as they can.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
6
65rosessamurai
Guest
I suppose real healthy would be defined as someone with CF who doesn't know what FEV1 and the percentages mean.
Could anyone please explain to the medically illiterate CF'r? (I know a lot of terms, just not ALL of them!)
There were a few other measurements on this page that I got the jist of, but am not sure of the meaning.<img src="i/expressions/face-icon-small-blush.gif" border="0">
I think it had to do with lung capacity, measured by a spirometer (is that right?)
My lung function has always been compared to a "mild smoker", by some doctors.
Could anyone please explain to the medically illiterate CF'r? (I know a lot of terms, just not ALL of them!)
There were a few other measurements on this page that I got the jist of, but am not sure of the meaning.<img src="i/expressions/face-icon-small-blush.gif" border="0">
I think it had to do with lung capacity, measured by a spirometer (is that right?)
My lung function has always been compared to a "mild smoker", by some doctors.
Emily65Roses
New member
Well 100% is what they expect of someone your age, gender, height, weight, etc. If you have that or better, then you're doing pretty well. It goes as any other percentage would, the less you have the worse.
FEV1 = forced expiratory volume in 1 second. When you're doing PFTs (not a spirometer, as far as I know, you use giant special PFT machinery hooked up the computers to calculate numbers with the help of a PFT specialist, etc) you suck in all the air you can, and then blow out as fast and as hard as possible. The air you get out in that first second is what the FEV1 is, and that's what most doctors like to keep track of our lung function by.
FEV1 = forced expiratory volume in 1 second. When you're doing PFTs (not a spirometer, as far as I know, you use giant special PFT machinery hooked up the computers to calculate numbers with the help of a PFT specialist, etc) you suck in all the air you can, and then blow out as fast and as hard as possible. The air you get out in that first second is what the FEV1 is, and that's what most doctors like to keep track of our lung function by.
6
65rosessamurai
Guest
I'd have to dig that info up again, but from what I recall, no psudomonas and I don't think there was MRSA (What's MRSA?).<img src="i/expressions/face-icon-small-confused.gif" border="0">
I asked my doctor to look for auriginosis, of which he didn't find, or didn't find a level above any concern.
I think that with my living in Japan, I may have been lucky to be isolated from cepacia, though I remember hearing about it when I was 18.
My only current problem is that due to my decrease in strenuous excercise, I think my lungs have begun to get more conjested.<img src="i/expressions/coughing.gif" border="0">
By the way, who's the "Anonymous" asking? I'm curious.
I asked my doctor to look for auriginosis, of which he didn't find, or didn't find a level above any concern.
I think that with my living in Japan, I may have been lucky to be isolated from cepacia, though I remember hearing about it when I was 18.
My only current problem is that due to my decrease in strenuous excercise, I think my lungs have begun to get more conjested.<img src="i/expressions/coughing.gif" border="0">
By the way, who's the "Anonymous" asking? I'm curious.
Emily65Roses
New member
MRSA = Methicillin-Resistant Staphylococcus Aureus
It's particularly resistant, and can be a real b*tch. I haven't cultured it since 01, but they still isolate me in the hospital because of it. Hah.
It's particularly resistant, and can be a real b*tch. I haven't cultured it since 01, but they still isolate me in the hospital because of it. Hah.
You dont have to be isolated from MRSA or cepcia to keep from catching it. So living in Japan doesnt exclude you at all. Its like psuedomonas you can get it anywhere at anytime. Although pseudo is found in/on everything. Cepicia is found on less things..in particular rotting onions; of course many other things but at the moment rotting onions is the one thing sticking out in my mind. Do a google search on B. cepcia and it will tell you more about it and how its usually caught.
You dont have to be isolated from MRSA or cepcia to keep from catching it. So living in Japan doesnt exclude you at all. Its like psuedomonas you can get it anywhere at anytime. Although pseudo is found in/on everything. Cepicia is found on less things..in particular rotting onions; of course many other things but at the moment rotting onions is the one thing sticking out in my mind. Do a google search on B. cepcia and it will tell you more about it and how its usually caught.
I'm the anonoymous poster & the one that asked if you cultured either of these things.
My reason is that it seems that a lot of times that people that are not in an area where there is a 'CF Clinic' often times do not culture MRSA, cepacia, etc. and I wonder if there is any correlation there. Unfortunately, pseudomonas is one that you can pick up anyplace.
I just have wondered if we are picking up stuff such as MRSA at the clinic, at hospitals, both places or neither. I would also be curious to know if people that have been diagnosed w/CF later in life and start to go to the CFC all the sudden start to culture things they didn't for years. I just wish there were some studies done on cross infection and if it is very common or not. I suppose a lot of that has to do w/ the cleanliness at the center or hospital that you attend.
I don't know why I'm curious about this, I guess I don't have anything else to do at the time <img src="i/expressions/face-icon-small-confused.gif" border="0">
My reason is that it seems that a lot of times that people that are not in an area where there is a 'CF Clinic' often times do not culture MRSA, cepacia, etc. and I wonder if there is any correlation there. Unfortunately, pseudomonas is one that you can pick up anyplace.
I just have wondered if we are picking up stuff such as MRSA at the clinic, at hospitals, both places or neither. I would also be curious to know if people that have been diagnosed w/CF later in life and start to go to the CFC all the sudden start to culture things they didn't for years. I just wish there were some studies done on cross infection and if it is very common or not. I suppose a lot of that has to do w/ the cleanliness at the center or hospital that you attend.
I don't know why I'm curious about this, I guess I don't have anything else to do at the time <img src="i/expressions/face-icon-small-confused.gif" border="0">