Terrible FEV1

[ScottLippmann]

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

 

[LouLou]

Scott, Welcome to the boards. I assume you are new but I didn't do a search to double check. I just wanted to write to suggest that start a seperate post regarding your good questions and request for tips. You'll get a lot more feedback and allow this post to stay on track.

Your situation sounds very familar to mine. When I came to this board I expected to be a 'healthy' one and for most people to not care for themselves as well as I and to be doom and gloom. WOW! Have I been surprised. At 67% FEV1 I am middle of the road effected when compared to others on this site and the motivation of people on here is addictive. Most people are doing the routine I'm doing or very similar and you here very little complaining. What's kept me around is all the tidbits of information that I learn that I feel I literally couldn't live without knowing. I hope you find the site even half as helpful as me. Definitely make use of the search feature.

 

[LouLou]

Scott, Welcome to the boards. I assume you are new but I didn't do a search to double check. I just wanted to write to suggest that start a seperate post regarding your good questions and request for tips. You'll get a lot more feedback and allow this post to stay on track.

Your situation sounds very familar to mine. When I came to this board I expected to be a 'healthy' one and for most people to not care for themselves as well as I and to be doom and gloom. WOW! Have I been surprised. At 67% FEV1 I am middle of the road effected when compared to others on this site and the motivation of people on here is addictive. Most people are doing the routine I'm doing or very similar and you here very little complaining. What's kept me around is all the tidbits of information that I learn that I feel I literally couldn't live without knowing. I hope you find the site even half as helpful as me. Definitely make use of the search feature.

 

[LouLou]

Scott, Welcome to the boards. I assume you are new but I didn't do a search to double check. I just wanted to write to suggest that start a seperate post regarding your good questions and request for tips. You'll get a lot more feedback and allow this post to stay on track.

Your situation sounds very familar to mine. When I came to this board I expected to be a 'healthy' one and for most people to not care for themselves as well as I and to be doom and gloom. WOW! Have I been surprised. At 67% FEV1 I am middle of the road effected when compared to others on this site and the motivation of people on here is addictive. Most people are doing the routine I'm doing or very similar and you here very little complaining. What's kept me around is all the tidbits of information that I learn that I feel I literally couldn't live without knowing. I hope you find the site even half as helpful as me. Definitely make use of the search feature.

 

[Kelli]

To me my FEV is just a number. I just go by how I feel not test results. I get very down about my FEV's sometimes so I just stay in 'check' by watching how I feel. I don't always think my FEV is a true indication of how I feel. Sometimes I feel great with low FEV's and not so great with high ones. Just depends on the day I guess.
I am sorry that you are bummed about this. Like many of the posts have said, perhaps it's just an off day for you, or a bunch of other factors. Try not to let it get you down.
Good luck and feel good!
~Kelli
29 f w.CF

 

[Kelli]

To me my FEV is just a number. I just go by how I feel not test results. I get very down about my FEV's sometimes so I just stay in 'check' by watching how I feel. I don't always think my FEV is a true indication of how I feel. Sometimes I feel great with low FEV's and not so great with high ones. Just depends on the day I guess.
I am sorry that you are bummed about this. Like many of the posts have said, perhaps it's just an off day for you, or a bunch of other factors. Try not to let it get you down.
Good luck and feel good!
~Kelli
29 f w.CF

 

[Kelli]

To me my FEV is just a number. I just go by how I feel not test results. I get very down about my FEV's sometimes so I just stay in 'check' by watching how I feel. I don't always think my FEV is a true indication of how I feel. Sometimes I feel great with low FEV's and not so great with high ones. Just depends on the day I guess.
I am sorry that you are bummed about this. Like many of the posts have said, perhaps it's just an off day for you, or a bunch of other factors. Try not to let it get you down.
Good luck and feel good!
~Kelli
29 f w.CF

 

[cdale613]

Hey Sonia,

I'm sorry to hear about your drop - it is tough going into an appointment feeling good and see numbers that don't quite match up - the same thing happened to me last week - I'm down 5% too. I've started cipro and will be going back in a couple weeks to see if I need IVs, etc.

However... there is a lot in your post to feel good about. The reason you physically are feeling pretty good despite your numbers is because you've been working out. You are in better cardio-vascular shape, and as a result you aren't noticing the small drop in your numbers. In the past, when you were in worse shape, you would have noticed the drop a lot more, and felt a lot worse. Similarly, being in better shape, your body has been able to fight the low-grade inflamation/infection of CF more efficiently, burning fewer calories, possibly explaining your weight gain.

None of this means that drops in lung function won't occur, but your hard work possibily prevented this from drop from being much larger, and hopefully, your recovery back to baseline will be much faster.

I agree with previous posters that 5% isn't huge, but agree that its certainly unsettling - I definitely begrudge the smallest drops too.

Hang in there,

Chris

26 m w/CF

 

[cdale613]

Hey Sonia,

I'm sorry to hear about your drop - it is tough going into an appointment feeling good and see numbers that don't quite match up - the same thing happened to me last week - I'm down 5% too. I've started cipro and will be going back in a couple weeks to see if I need IVs, etc.

However... there is a lot in your post to feel good about. The reason you physically are feeling pretty good despite your numbers is because you've been working out. You are in better cardio-vascular shape, and as a result you aren't noticing the small drop in your numbers. In the past, when you were in worse shape, you would have noticed the drop a lot more, and felt a lot worse. Similarly, being in better shape, your body has been able to fight the low-grade inflamation/infection of CF more efficiently, burning fewer calories, possibly explaining your weight gain.

None of this means that drops in lung function won't occur, but your hard work possibily prevented this from drop from being much larger, and hopefully, your recovery back to baseline will be much faster.

I agree with previous posters that 5% isn't huge, but agree that its certainly unsettling - I definitely begrudge the smallest drops too.

Hang in there,

Chris

26 m w/CF

 

[cdale613]

Hey Sonia,

I'm sorry to hear about your drop - it is tough going into an appointment feeling good and see numbers that don't quite match up - the same thing happened to me last week - I'm down 5% too. I've started cipro and will be going back in a couple weeks to see if I need IVs, etc.

However... there is a lot in your post to feel good about. The reason you physically are feeling pretty good despite your numbers is because you've been working out. You are in better cardio-vascular shape, and as a result you aren't noticing the small drop in your numbers. In the past, when you were in worse shape, you would have noticed the drop a lot more, and felt a lot worse. Similarly, being in better shape, your body has been able to fight the low-grade inflamation/infection of CF more efficiently, burning fewer calories, possibly explaining your weight gain.

None of this means that drops in lung function won't occur, but your hard work possibily prevented this from drop from being much larger, and hopefully, your recovery back to baseline will be much faster.

I agree with previous posters that 5% isn't huge, but agree that its certainly unsettling - I definitely begrudge the smallest drops too.

Hang in there,

Chris

26 m w/CF

 

[ladybug]

Thank you, everyone for the kind and caring posts! I really appreciate it! I'm feeling a bit better today with everything, but still woke up feeling really helpless and like I could easily break down and cry. But, I got up and started my daily routine so I couldn't/wouldn't dwell on it.

You all make some amazing points and are extremely comforting.

Laura... Thanks for your late-night post. I was tired last night and didn't reply, but it was so nice to hear a friendly "voice" right after I posted.

roguetrader... I hope together we can get our FEV1s up!!

Scott... I didn't mean 59% is a terrible FEV1 for everyone. I'm sorry if it came out that way. Its just terrible for me since its below my baseline for the past 5 years or so. I personally think FEV1 is relative to the person and should really only be tracked on a personal level. i.e. If you feel great at 49%, that is a good FEV1 for you, while someone else may really struggle at that FEV1. Also, I think external factors need to be taken into account. (i.e. I don't work or go to school right now, or my FEV1 DOES drop, while others can work full time and go to school and it won't effect them.... so, its really relative to the person.)

LouLou (and Laura)... You make a great point about the seasons, as I just recently started having the itchy throat and eyes and sneezing, but it had gone away, so I didn't chalk it up to allegies or season changes, but I suppose it could be. Especially since I go from desert dry spring air to cold, thin spring Salt Lake air just for the day before I do my pft. I guess that is deffinitely something to consider. I hadn't woke up stuffy yesterday for the first time in WEEKS, so figured I didn't have the allergies anymore, but today, back in Vegas, I woke up with a stuffy nose and headache, so apparently they're still around. Laura, maybe I'll try to read your blog. I have had problems getting into the blogs in the past and also didn't want to get addicted (lol), but I will have to start checking them out!

Diane and Kelli... Thanks. I'm starting to hope it was just an off day for me. I'm trying so hard to stay focused and not let it bring me down. I do know I have gone to CF appts. and had higher FEV1 than expected too, but its easier to be pleasantly surprised than completely shocked. I know what you mean though. I will try to keep things in perspective.

Chirs... You make some great points! I guess I never even took into consideration those things. And, yes, perhaps my body isn't feeling the need to work so hard to fight infections cause I am doing it externally... great points. I also agree that maybe I'm not feeling the drop for that reason and maybe that is something to be thankful for.

Thanks again everyone. You guys always know what to say....

 

[ladybug]

Thank you, everyone for the kind and caring posts! I really appreciate it! I'm feeling a bit better today with everything, but still woke up feeling really helpless and like I could easily break down and cry. But, I got up and started my daily routine so I couldn't/wouldn't dwell on it.

You all make some amazing points and are extremely comforting.

Laura... Thanks for your late-night post. I was tired last night and didn't reply, but it was so nice to hear a friendly "voice" right after I posted.

roguetrader... I hope together we can get our FEV1s up!!

Scott... I didn't mean 59% is a terrible FEV1 for everyone. I'm sorry if it came out that way. Its just terrible for me since its below my baseline for the past 5 years or so. I personally think FEV1 is relative to the person and should really only be tracked on a personal level. i.e. If you feel great at 49%, that is a good FEV1 for you, while someone else may really struggle at that FEV1. Also, I think external factors need to be taken into account. (i.e. I don't work or go to school right now, or my FEV1 DOES drop, while others can work full time and go to school and it won't effect them.... so, its really relative to the person.)

LouLou (and Laura)... You make a great point about the seasons, as I just recently started having the itchy throat and eyes and sneezing, but it had gone away, so I didn't chalk it up to allegies or season changes, but I suppose it could be. Especially since I go from desert dry spring air to cold, thin spring Salt Lake air just for the day before I do my pft. I guess that is deffinitely something to consider. I hadn't woke up stuffy yesterday for the first time in WEEKS, so figured I didn't have the allergies anymore, but today, back in Vegas, I woke up with a stuffy nose and headache, so apparently they're still around. Laura, maybe I'll try to read your blog. I have had problems getting into the blogs in the past and also didn't want to get addicted (lol), but I will have to start checking them out!

Diane and Kelli... Thanks. I'm starting to hope it was just an off day for me. I'm trying so hard to stay focused and not let it bring me down. I do know I have gone to CF appts. and had higher FEV1 than expected too, but its easier to be pleasantly surprised than completely shocked. I know what you mean though. I will try to keep things in perspective.

Chirs... You make some great points! I guess I never even took into consideration those things. And, yes, perhaps my body isn't feeling the need to work so hard to fight infections cause I am doing it externally... great points. I also agree that maybe I'm not feeling the drop for that reason and maybe that is something to be thankful for.

Thanks again everyone. You guys always know what to say....

 

[ladybug]

Thank you, everyone for the kind and caring posts! I really appreciate it! I'm feeling a bit better today with everything, but still woke up feeling really helpless and like I could easily break down and cry. But, I got up and started my daily routine so I couldn't/wouldn't dwell on it.

You all make some amazing points and are extremely comforting.

Laura... Thanks for your late-night post. I was tired last night and didn't reply, but it was so nice to hear a friendly "voice" right after I posted.

roguetrader... I hope together we can get our FEV1s up!!

Scott... I didn't mean 59% is a terrible FEV1 for everyone. I'm sorry if it came out that way. Its just terrible for me since its below my baseline for the past 5 years or so. I personally think FEV1 is relative to the person and should really only be tracked on a personal level. i.e. If you feel great at 49%, that is a good FEV1 for you, while someone else may really struggle at that FEV1. Also, I think external factors need to be taken into account. (i.e. I don't work or go to school right now, or my FEV1 DOES drop, while others can work full time and go to school and it won't effect them.... so, its really relative to the person.)

LouLou (and Laura)... You make a great point about the seasons, as I just recently started having the itchy throat and eyes and sneezing, but it had gone away, so I didn't chalk it up to allegies or season changes, but I suppose it could be. Especially since I go from desert dry spring air to cold, thin spring Salt Lake air just for the day before I do my pft. I guess that is deffinitely something to consider. I hadn't woke up stuffy yesterday for the first time in WEEKS, so figured I didn't have the allergies anymore, but today, back in Vegas, I woke up with a stuffy nose and headache, so apparently they're still around. Laura, maybe I'll try to read your blog. I have had problems getting into the blogs in the past and also didn't want to get addicted (lol), but I will have to start checking them out!

Diane and Kelli... Thanks. I'm starting to hope it was just an off day for me. I'm trying so hard to stay focused and not let it bring me down. I do know I have gone to CF appts. and had higher FEV1 than expected too, but its easier to be pleasantly surprised than completely shocked. I know what you mean though. I will try to keep things in perspective.

Chirs... You make some great points! I guess I never even took into consideration those things. And, yes, perhaps my body isn't feeling the need to work so hard to fight infections cause I am doing it externally... great points. I also agree that maybe I'm not feeling the drop for that reason and maybe that is something to be thankful for.

Thanks again everyone. You guys always know what to say....

 

[ScottLippmann]

Good for you to get up and get moving!
That's the hardest part for sure.

Thanks for the positive feedback. All of this just makes me want to start working harder at getting things back up. Hopefully that is motivation for you as well!

Hopefully everyone can get themselves back up and stay motivated.

Scott

 

[ScottLippmann]

Good for you to get up and get moving!
That's the hardest part for sure.

Thanks for the positive feedback. All of this just makes me want to start working harder at getting things back up. Hopefully that is motivation for you as well!

Hopefully everyone can get themselves back up and stay motivated.

Scott

 

[ScottLippmann]

Good for you to get up and get moving!
That's the hardest part for sure.

Thanks for the positive feedback. All of this just makes me want to start working harder at getting things back up. Hopefully that is motivation for you as well!

Hopefully everyone can get themselves back up and stay motivated.

Scott

 

[ladybug]

Scott,

Its great that you are motivated! I guess this recent drop has done the opposite for me since I used to be very motivated and worked out and was vigorous with treatments, etc... Now, I feel like no matter how hard I try, it won't matter. I know that's kinda a doomsday approach, and maybe I'm just mourning the recent drop in PFTs, but I feel absolutely helpless now that I've tried so extremely hard and my body can just come crashing down no matter what I do.

.... Anyway, I don't mean to steal your motivation. You seem very strong and positive, but for once in my life, I just can't share that with you, as I feel I should be doing better than this. (sorry to whine) <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[ladybug]

Scott,

Its great that you are motivated! I guess this recent drop has done the opposite for me since I used to be very motivated and worked out and was vigorous with treatments, etc... Now, I feel like no matter how hard I try, it won't matter. I know that's kinda a doomsday approach, and maybe I'm just mourning the recent drop in PFTs, but I feel absolutely helpless now that I've tried so extremely hard and my body can just come crashing down no matter what I do.

.... Anyway, I don't mean to steal your motivation. You seem very strong and positive, but for once in my life, I just can't share that with you, as I feel I should be doing better than this. (sorry to whine) <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[ladybug]

Scott,

Its great that you are motivated! I guess this recent drop has done the opposite for me since I used to be very motivated and worked out and was vigorous with treatments, etc... Now, I feel like no matter how hard I try, it won't matter. I know that's kinda a doomsday approach, and maybe I'm just mourning the recent drop in PFTs, but I feel absolutely helpless now that I've tried so extremely hard and my body can just come crashing down no matter what I do.

.... Anyway, I don't mean to steal your motivation. You seem very strong and positive, but for once in my life, I just can't share that with you, as I feel I should be doing better than this. (sorry to whine) <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[ScottLippmann]

Sonia,

I completely understand where you are coming from. Before I went into the hospital over a year and a half ago I was extremely vigorous with my treatments and working out. My weight routine was getting pretty crazy and I was feeling really great, and normal. I had started dating someone and felt my life was in good order. Then I went in for a clinic appointment, my g/f at the time came with me too. I thought "This will be great, spend the day in London, get some food, hang out, and go have a great clinic" Not so. My FEV1 had fallen below 28% and I was back into a bed at the hospital that night.

I felt the exact same way you are feeling right now. I was at a total loss for words and couldn't understand. When I got out I didn't start back at the gym because I felt that it didn't matter what I did the numbers would go down regardless. That was something my g/f at the time could not understand and I don't think anyone without CF could understand that point of view for that matter. It almost seems like a futile effort at times.

Then one day I decided to go the gym again. I didn't like how I had lost the one major part of my life that really helped me feel like I could do something that people with normal lungs could do so well, and keep up at the very least. So I started doing weights again and have kept up pretty steady since then.

And I was feeling pretty good, but then I saw this forum and decided to join and see all these people in their late 20's, 30's and up with FEV1 results 50% higher. And for a moment I thought again what I was thinking that one visit that shot me down. <b>No one's fault, no one brought me down on this forum! I place NO blame.</b> But the last thing I want to do is lose that part of my life again that helps me feel like I have control.

I suppose that's the part that we need more than anything else, that feeling that we are controlling this. And when we see these tests results and they slip away despite best efforts that feeling of control slips with them.

I guess the only thing that can be done when we gets results like you have received is try to get an understanding as to why and try and aim up for next time. As people have posted, the numbers fluctuate throughout the day, bad time of year, not enough rest before an appointment. I even find that if I eat before an appointment my results will slip, so I skip all my meals for that day until the appointment is done. I know that's not great energy wise, and it's probably not recommended. <img src="i/expressions/face-icon-small-smile.gif" border="0">

You say that i'm motivated, but beleive me, I wish I was as strong and positive as you think I am. And I think I speak for everyone here, despite being new to this forum, that no one thinks you're whining!

From all the threads I've read on here, I think for once this is a place where people actually have about as complete an understanding as to where each poster is coming from as one could hope for.

Just remember, sometimes the illusion of control can be as beneficial as having the control itself. Without either that's when your hope is gone. Hold onto it. Look at those tests and work even harder for next time. I'm going to do the same and push myself up for my next appointment in 4 months. And I can honestly say it's thanks to everyone on this site. It really helped put myself into perspective and realize that I could be working even harder.

I know this has rambled on for a bit now. Sorry to anyone who actually read this far. But I'll post this for all also. I wrote this when I was feeling very bad about everything and didn't want to do anything anymore. Now I think it's more motivating than anything.

It's sappy... sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">

<i><b>Rusted Chains</b></i>

These chains that are binding,
Holding too tightly,
I struggle to breathe,
Using all of my might

But they do not give,
Not budge even slightly,
I scream out for help,
My words travel so lightly

I kick and I push,
I try what I can,
My mind is still slipping,
Please give me your hand

I can't do this for long,
Time is passing so fast,
A touch from your fingers,
Remind me of the past

The chains were much brighter,
And I wore them with pride,
But these tears have they weathered,
I can't stop but I've tried

Please give me your hand,
Help loosen their grip,
Help free me from sorrow,
Help make these chains slip.



Scott - 27 m