Terrible FEV1

L

ladybug

New member
Hi, everyone.

I rarely post on here because I just had a crappy crappy day, but feel the need to vent, so I hope no one minds my pitty pot...

Well, today I had CF clinic and went feeling pretty ok.... I had had a clean out in November that brought my FEV1 up to 68%, which was about 4% above baseline for me. Well, I've been doing ok since then... of course, the usual "downward trend" after IV meds... my gunk I'm coughing up is green and thick again and I'm a BIT shorter of breath, but not NEAR what I had been when I went on the IVs, and I'm still able to run and cook and clean and do things like "usual" for me.

... So, today I was completely shocked when I got to clinic and blew a 53% FEV1 on my first try and 2 consecutive 59%! I couldn't believe my eyes or believe how hard it was to continuously blow into the PFT! So, really, I've now gone from a baseline of 64% about 8 months ago to 59% 4 months after agressive antibiotics. I have NEVER had such a huge decrease and am completely devastated cause I just don't FEEL that bad! I feel like I'd for sure be back to baseline, but not 5% below that. I feel so totally hopeless tonight. I was exercising and everything and thought I was keeping my lungs in ok shape until this.

The other weird thing is that I've actually GAINED 5 lbs., which is usually VERY difficult for me. The docs thought it was weird that I gained weight if it is in fact a CF infection, as that usually causes weight LOSS if anything. I also haven't needed extra insulin or anything, which is another sign of infection.

So, does anyone know what could be going on here? Why could I feel good and have FEV1 lower than its been in 5 years?! Why would everything else point to "good" health except this huge drop? I'm just totally overwhelmed and terrified. For once, I feel I really don't have any control over this disease. I mean, I always thought I could fight fight fight and "go down trying" with exercise and doing treatments religiously, but apparently not. And, apparently my body doesn't even do a good job telling me when it IS sick....

I also know they're upping my prevacid since I've been getting terrible terrible heartburn for the past month or so. Not sure if that could be the main factor in the FEV1 dropping, but I just really want to be able to blame it on something OTHER than what it probably is.

Please, if anyone could share their experiences or offer me some words, I would really appreciate it. I'm feeling so low right now. Its like I'm in shock or something....

Thanks,
 
L

ladybug

New member
Hi, everyone.

I rarely post on here because I just had a crappy crappy day, but feel the need to vent, so I hope no one minds my pitty pot...

Well, today I had CF clinic and went feeling pretty ok.... I had had a clean out in November that brought my FEV1 up to 68%, which was about 4% above baseline for me. Well, I've been doing ok since then... of course, the usual "downward trend" after IV meds... my gunk I'm coughing up is green and thick again and I'm a BIT shorter of breath, but not NEAR what I had been when I went on the IVs, and I'm still able to run and cook and clean and do things like "usual" for me.

... So, today I was completely shocked when I got to clinic and blew a 53% FEV1 on my first try and 2 consecutive 59%! I couldn't believe my eyes or believe how hard it was to continuously blow into the PFT! So, really, I've now gone from a baseline of 64% about 8 months ago to 59% 4 months after agressive antibiotics. I have NEVER had such a huge decrease and am completely devastated cause I just don't FEEL that bad! I feel like I'd for sure be back to baseline, but not 5% below that. I feel so totally hopeless tonight. I was exercising and everything and thought I was keeping my lungs in ok shape until this.

The other weird thing is that I've actually GAINED 5 lbs., which is usually VERY difficult for me. The docs thought it was weird that I gained weight if it is in fact a CF infection, as that usually causes weight LOSS if anything. I also haven't needed extra insulin or anything, which is another sign of infection.

So, does anyone know what could be going on here? Why could I feel good and have FEV1 lower than its been in 5 years?! Why would everything else point to "good" health except this huge drop? I'm just totally overwhelmed and terrified. For once, I feel I really don't have any control over this disease. I mean, I always thought I could fight fight fight and "go down trying" with exercise and doing treatments religiously, but apparently not. And, apparently my body doesn't even do a good job telling me when it IS sick....

I also know they're upping my prevacid since I've been getting terrible terrible heartburn for the past month or so. Not sure if that could be the main factor in the FEV1 dropping, but I just really want to be able to blame it on something OTHER than what it probably is.

Please, if anyone could share their experiences or offer me some words, I would really appreciate it. I'm feeling so low right now. Its like I'm in shock or something....

Thanks,
 
L

ladybug

New member
Hi, everyone.

I rarely post on here because I just had a crappy crappy day, but feel the need to vent, so I hope no one minds my pitty pot...

Well, today I had CF clinic and went feeling pretty ok.... I had had a clean out in November that brought my FEV1 up to 68%, which was about 4% above baseline for me. Well, I've been doing ok since then... of course, the usual "downward trend" after IV meds... my gunk I'm coughing up is green and thick again and I'm a BIT shorter of breath, but not NEAR what I had been when I went on the IVs, and I'm still able to run and cook and clean and do things like "usual" for me.

... So, today I was completely shocked when I got to clinic and blew a 53% FEV1 on my first try and 2 consecutive 59%! I couldn't believe my eyes or believe how hard it was to continuously blow into the PFT! So, really, I've now gone from a baseline of 64% about 8 months ago to 59% 4 months after agressive antibiotics. I have NEVER had such a huge decrease and am completely devastated cause I just don't FEEL that bad! I feel like I'd for sure be back to baseline, but not 5% below that. I feel so totally hopeless tonight. I was exercising and everything and thought I was keeping my lungs in ok shape until this.

The other weird thing is that I've actually GAINED 5 lbs., which is usually VERY difficult for me. The docs thought it was weird that I gained weight if it is in fact a CF infection, as that usually causes weight LOSS if anything. I also haven't needed extra insulin or anything, which is another sign of infection.

So, does anyone know what could be going on here? Why could I feel good and have FEV1 lower than its been in 5 years?! Why would everything else point to "good" health except this huge drop? I'm just totally overwhelmed and terrified. For once, I feel I really don't have any control over this disease. I mean, I always thought I could fight fight fight and "go down trying" with exercise and doing treatments religiously, but apparently not. And, apparently my body doesn't even do a good job telling me when it IS sick....

I also know they're upping my prevacid since I've been getting terrible terrible heartburn for the past month or so. Not sure if that could be the main factor in the FEV1 dropping, but I just really want to be able to blame it on something OTHER than what it probably is.

Please, if anyone could share their experiences or offer me some words, I would really appreciate it. I'm feeling so low right now. Its like I'm in shock or something....

Thanks,
 
C

catboogie

New member
sonia,

i'm sorry to hear this--it stinks! i have one practical and two theoretical pieces of advice. first off, could allergies be affecting your health? (i've recently gone through allergy testing, so of course that comes to mind. i recorded my experience in my blog, even though you say you don't read the blogs!)

secondly, i roll my eyes when the docs talk about the margin of error that is allowed in the PFT machines. but keep in mind, it is not an exact science.

it is all too easy to get caught up in the number game of CF. in reality, when you are able to run and clean and go about your life as you say, you obviously have a good quality of life, the most important thing! i wouldn't be too concerned. it is impossible to tell what is going on completely on the cell level of your body--catching a virus, fighting something off--so keep doing what you're doing and i bet things will swing back the other way.

good luck!
 
C

catboogie

New member
sonia,

i'm sorry to hear this--it stinks! i have one practical and two theoretical pieces of advice. first off, could allergies be affecting your health? (i've recently gone through allergy testing, so of course that comes to mind. i recorded my experience in my blog, even though you say you don't read the blogs!)

secondly, i roll my eyes when the docs talk about the margin of error that is allowed in the PFT machines. but keep in mind, it is not an exact science.

it is all too easy to get caught up in the number game of CF. in reality, when you are able to run and clean and go about your life as you say, you obviously have a good quality of life, the most important thing! i wouldn't be too concerned. it is impossible to tell what is going on completely on the cell level of your body--catching a virus, fighting something off--so keep doing what you're doing and i bet things will swing back the other way.

good luck!
 
C

catboogie

New member
sonia,

i'm sorry to hear this--it stinks! i have one practical and two theoretical pieces of advice. first off, could allergies be affecting your health? (i've recently gone through allergy testing, so of course that comes to mind. i recorded my experience in my blog, even though you say you don't read the blogs!)

secondly, i roll my eyes when the docs talk about the margin of error that is allowed in the PFT machines. but keep in mind, it is not an exact science.

it is all too easy to get caught up in the number game of CF. in reality, when you are able to run and clean and go about your life as you say, you obviously have a good quality of life, the most important thing! i wouldn't be too concerned. it is impossible to tell what is going on completely on the cell level of your body--catching a virus, fighting something off--so keep doing what you're doing and i bet things will swing back the other way.

good luck!
 
R

roguetrader

New member
Hi, This is a very interesting post. I myself know how you feel a bit. Last year I came back from 4 years abroad and had not been to the hospital in all that time (naughty I know) when I finally went , and I was feeling poor at the time, I discovered my lung funtion had dropped from around 2litres (4 years ago) to 1.3 litres. the doctors put me on some meds and i had developed pysuedamonis (forgive spelling) and I immediatly started exercising more. I felt much much better but my lung function over the past year still is not getting above 1.5 even though at times I feel better than I have done in years. Im struggling very hard to try and get my lung function back up again and it frustrates me when I do these tests and perform no better than before. I sometimes wonder if going on lots of meds all of a sudden in your life doesnt spark off other things. does anyone else know what i mean by this??

oh well, keep up the good work sonia, we can but try!!
 
R

roguetrader

New member
Hi, This is a very interesting post. I myself know how you feel a bit. Last year I came back from 4 years abroad and had not been to the hospital in all that time (naughty I know) when I finally went , and I was feeling poor at the time, I discovered my lung funtion had dropped from around 2litres (4 years ago) to 1.3 litres. the doctors put me on some meds and i had developed pysuedamonis (forgive spelling) and I immediatly started exercising more. I felt much much better but my lung function over the past year still is not getting above 1.5 even though at times I feel better than I have done in years. Im struggling very hard to try and get my lung function back up again and it frustrates me when I do these tests and perform no better than before. I sometimes wonder if going on lots of meds all of a sudden in your life doesnt spark off other things. does anyone else know what i mean by this??

oh well, keep up the good work sonia, we can but try!!
 
R

roguetrader

New member
Hi, This is a very interesting post. I myself know how you feel a bit. Last year I came back from 4 years abroad and had not been to the hospital in all that time (naughty I know) when I finally went , and I was feeling poor at the time, I discovered my lung funtion had dropped from around 2litres (4 years ago) to 1.3 litres. the doctors put me on some meds and i had developed pysuedamonis (forgive spelling) and I immediatly started exercising more. I felt much much better but my lung function over the past year still is not getting above 1.5 even though at times I feel better than I have done in years. Im struggling very hard to try and get my lung function back up again and it frustrates me when I do these tests and perform no better than before. I sometimes wonder if going on lots of meds all of a sudden in your life doesnt spark off other things. does anyone else know what i mean by this??

oh well, keep up the good work sonia, we can but try!!
 
L

LouLou

New member
the difference between 59 and 64 (your baseline) really isn't that big of a jump. This is a difficult time of year with the change of seasons. Give yourself a break (I know easier said than done) and do your cf routine to the tee including exercise and I'm sure you'll see a steady increase between now and June 1.
 
L

LouLou

New member
the difference between 59 and 64 (your baseline) really isn't that big of a jump. This is a difficult time of year with the change of seasons. Give yourself a break (I know easier said than done) and do your cf routine to the tee including exercise and I'm sure you'll see a steady increase between now and June 1.
 
L

LouLou

New member
the difference between 59 and 64 (your baseline) really isn't that big of a jump. This is a difficult time of year with the change of seasons. Give yourself a break (I know easier said than done) and do your cf routine to the tee including exercise and I'm sure you'll see a steady increase between now and June 1.
 
D

Diane

New member
I have a peak flow meter and something called an airwatch which is similar to a handheld pft indicator but you only get the fev1 # with it. I have noticed on days when i have done it several times in a day it can be very different each time. Like Lauren said 64 to 59 isnt a horrible alarming difference. It may just be an off day for you.
 
D

Diane

New member
I have a peak flow meter and something called an airwatch which is similar to a handheld pft indicator but you only get the fev1 # with it. I have noticed on days when i have done it several times in a day it can be very different each time. Like Lauren said 64 to 59 isnt a horrible alarming difference. It may just be an off day for you.
 
D

Diane

New member
I have a peak flow meter and something called an airwatch which is similar to a handheld pft indicator but you only get the fev1 # with it. I have noticed on days when i have done it several times in a day it can be very different each time. Like Lauren said 64 to 59 isnt a horrible alarming difference. It may just be an off day for you.
 
S

ScottLippmann

New member
I have a question because this post now has me worried.

I have an FEV1 of 49%. It is consistantly at 49% for almost a year and half now. I go to the gym daily to do weights. Now i'm planning to start doing cardio a lot more from other posts that i've read.

Is 49% really that bad? I work full time, live on my own, and taking some night classes. But at the same time i feel really good. Feel better than I've felt in years. I was in the hospital about a year and half ago when my FEV1 was around 28%. They took me immediately, but even at that time I felt good. Since I came out my FEV1 has been at the same level it was late 2002.

I guess i'm looking for some worldly advice because I see people on here older than me with FEV1 results up in the 60s, 70s and even higher.

What is your therapy regiment like and what kinds of meds are you taking.

Mine is as follows:

<b>Morning - 6:30am</b>
Inhalation - Tobramycin & Ventolin
Inhalation - Pulmozyme (Told to do this in the morning so it has the day to work out the crap.)

1/2 Hour device assisted percussions

Meds:
Ranitadine - Chronic heart burn from the other meds.
Azithromycin
Doxycycline
ADEK Multivitamins - 800mg
Caltrate Select - 800mg

<b>Noon - Gym for 1 hour</b> Immediately after 2 packages of Carnation Instant Breakfast in 500ml 2% milk
(Gives me the energy to get through the rest of the day <img src=""> )

<b>Evening:</b>
Inhalation - Tobramyacin & Ventolin
3/4 Hour device assisted percussions (Not TheVest, but it would be nice)

Any suggestions would be amazing to say the least.

Scott - 27m CF w/ Cepacia - 165lbs
 
S

ScottLippmann

New member
I have a question because this post now has me worried.

I have an FEV1 of 49%. It is consistantly at 49% for almost a year and half now. I go to the gym daily to do weights. Now i'm planning to start doing cardio a lot more from other posts that i've read.

Is 49% really that bad? I work full time, live on my own, and taking some night classes. But at the same time i feel really good. Feel better than I've felt in years. I was in the hospital about a year and half ago when my FEV1 was around 28%. They took me immediately, but even at that time I felt good. Since I came out my FEV1 has been at the same level it was late 2002.

I guess i'm looking for some worldly advice because I see people on here older than me with FEV1 results up in the 60s, 70s and even higher.

What is your therapy regiment like and what kinds of meds are you taking.

Mine is as follows:

<b>Morning - 6:30am</b>
Inhalation - Tobramycin & Ventolin
Inhalation - Pulmozyme (Told to do this in the morning so it has the day to work out the crap.)

1/2 Hour device assisted percussions

Meds:
Ranitadine - Chronic heart burn from the other meds.
Azithromycin
Doxycycline
ADEK Multivitamins - 800mg
Caltrate Select - 800mg

<b>Noon - Gym for 1 hour</b> Immediately after 2 packages of Carnation Instant Breakfast in 500ml 2% milk
(Gives me the energy to get through the rest of the day <img src=""> )

<b>Evening:</b>
Inhalation - Tobramyacin & Ventolin
3/4 Hour device assisted percussions (Not TheVest, but it would be nice)

Any suggestions would be amazing to say the least.

Scott - 27m CF w/ Cepacia - 165lbs
 
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