I want...

Kristen · Aug 1, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: jbrandonAW

WOW those are some really good numbers. For those with numbers over 80 - what do you do the get them that high or keep them that high???

Have they ever been really low.

O the reason I asked about IV's is b/c most of the time your PFT's are always a little higher during or right after IV's.</end quote></div>

1. One of my CF mutations is considered "mild"(R117H).

2. I workout for about an hour five days a week, and I've been doing this since high school. I was an athlete in college, so that helped teach me discipline when it comes to working out. I do 30-min of cardio that gets my heart rate in the range of 135-160 4 times a week, plus weight lifting & stretching.

3. I make sleep a priority. I find I catch colds so much more easily when I am run-down.

4. I am compliant with my meds. I probably only miss a treatment about 3 times a year.

5. When I do get sick, I rest, rest, rest to minimize the severity of the illness.

6. I'm not sure how much this is related, but I drink a ton of water.

7. Ditto saveferris on the less stressful job - I made a career change 3 years ago that requires fewer hours (40 instead of 50) and has tons of flexibility, so I can sleep in & come in late when I an run-down, etc, and I have time to fit in items 2-5. Oh, and I also do nebs in the car to save time.

8. I didn't culture an CF bugs until I was a teen. First it was Staph, then the Staph went away and I started getting PA around age 24. Since starting colistin AND hypertonic saline (I was doing colistin w/out HS for a year), I seem to be back to Staph - I haven't cultured PA in almost 2 years, and I am culturing Staph again.

I will admit that I am horrendous about airway clearance. I only do it when I am sick and can't exercise. I am trying to make a point to go to my car (at work) midday to do my acapella, but I rarely actually end up doing it.

Kristen · Aug 1, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: jbrandonAW

WOW those are some really good numbers. For those with numbers over 80 - what do you do the get them that high or keep them that high???

Have they ever been really low.

O the reason I asked about IV's is b/c most of the time your PFT's are always a little higher during or right after IV's.</end quote></div>

1. One of my CF mutations is considered "mild"(R117H).

2. I workout for about an hour five days a week, and I've been doing this since high school. I was an athlete in college, so that helped teach me discipline when it comes to working out. I do 30-min of cardio that gets my heart rate in the range of 135-160 4 times a week, plus weight lifting & stretching.

3. I make sleep a priority. I find I catch colds so much more easily when I am run-down.

4. I am compliant with my meds. I probably only miss a treatment about 3 times a year.

5. When I do get sick, I rest, rest, rest to minimize the severity of the illness.

6. I'm not sure how much this is related, but I drink a ton of water.

7. Ditto saveferris on the less stressful job - I made a career change 3 years ago that requires fewer hours (40 instead of 50) and has tons of flexibility, so I can sleep in & come in late when I an run-down, etc, and I have time to fit in items 2-5. Oh, and I also do nebs in the car to save time.

8. I didn't culture an CF bugs until I was a teen. First it was Staph, then the Staph went away and I started getting PA around age 24. Since starting colistin AND hypertonic saline (I was doing colistin w/out HS for a year), I seem to be back to Staph - I haven't cultured PA in almost 2 years, and I am culturing Staph again.

I will admit that I am horrendous about airway clearance. I only do it when I am sick and can't exercise. I am trying to make a point to go to my car (at work) midday to do my acapella, but I rarely actually end up doing it.

Kristen · Aug 1, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: jbrandonAW

WOW those are some really good numbers. For those with numbers over 80 - what do you do the get them that high or keep them that high???

Have they ever been really low.

O the reason I asked about IV's is b/c most of the time your PFT's are always a little higher during or right after IV's.</end quote></div>

1. One of my CF mutations is considered "mild"(R117H).

2. I workout for about an hour five days a week, and I've been doing this since high school. I was an athlete in college, so that helped teach me discipline when it comes to working out. I do 30-min of cardio that gets my heart rate in the range of 135-160 4 times a week, plus weight lifting & stretching.

3. I make sleep a priority. I find I catch colds so much more easily when I am run-down.

4. I am compliant with my meds. I probably only miss a treatment about 3 times a year.

5. When I do get sick, I rest, rest, rest to minimize the severity of the illness.

6. I'm not sure how much this is related, but I drink a ton of water.

7. Ditto saveferris on the less stressful job - I made a career change 3 years ago that requires fewer hours (40 instead of 50) and has tons of flexibility, so I can sleep in & come in late when I an run-down, etc, and I have time to fit in items 2-5. Oh, and I also do nebs in the car to save time.

8. I didn't culture an CF bugs until I was a teen. First it was Staph, then the Staph went away and I started getting PA around age 24. Since starting colistin AND hypertonic saline (I was doing colistin w/out HS for a year), I seem to be back to Staph - I haven't cultured PA in almost 2 years, and I am culturing Staph again.

I will admit that I am horrendous about airway clearance. I only do it when I am sick and can't exercise. I am trying to make a point to go to my car (at work) midday to do my acapella, but I rarely actually end up doing it.

Kristen · Aug 1, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: jbrandonAW

WOW those are some really good numbers. For those with numbers over 80 - what do you do the get them that high or keep them that high???

Have they ever been really low.

O the reason I asked about IV's is b/c most of the time your PFT's are always a little higher during or right after IV's.</end quote>

1. One of my CF mutations is considered "mild"(R117H).

2. I workout for about an hour five days a week, and I've been doing this since high school. I was an athlete in college, so that helped teach me discipline when it comes to working out. I do 30-min of cardio that gets my heart rate in the range of 135-160 4 times a week, plus weight lifting & stretching.

3. I make sleep a priority. I find I catch colds so much more easily when I am run-down.

4. I am compliant with my meds. I probably only miss a treatment about 3 times a year.

5. When I do get sick, I rest, rest, rest to minimize the severity of the illness.

6. I'm not sure how much this is related, but I drink a ton of water.

7. Ditto saveferris on the less stressful job - I made a career change 3 years ago that requires fewer hours (40 instead of 50) and has tons of flexibility, so I can sleep in & come in late when I an run-down, etc, and I have time to fit in items 2-5. Oh, and I also do nebs in the car to save time.

8. I didn't culture an CF bugs until I was a teen. First it was Staph, then the Staph went away and I started getting PA around age 24. Since starting colistin AND hypertonic saline (I was doing colistin w/out HS for a year), I seem to be back to Staph - I haven't cultured PA in almost 2 years, and I am culturing Staph again.

I will admit that I am horrendous about airway clearance. I only do it when I am sick and can't exercise. I am trying to make a point to go to my car (at work) midday to do my acapella, but I rarely actually end up doing it.

Kristen · Aug 1, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: jbrandonAW
 
 WOW those are some really good numbers. For those with numbers over 80 - what do you do the get them that high or keep them that high???
 
 
 
 Have they ever been really low.
 
 
 
 O the reason I asked about IV's is b/c most of the time your PFT's are always a little higher during or right after IV's.</end quote>
 
 1. One of my CF mutations is considered "mild"(R117H).
 
 2. I workout for about an hour five days a week, and I've been doing this since high school. I was an athlete in college, so that helped teach me discipline when it comes to working out. I do 30-min of cardio that gets my heart rate in the range of 135-160 4 times a week, plus weight lifting & stretching.
 
 3. I make sleep a priority. I find I catch colds so much more easily when I am run-down.
 
 4. I am compliant with my meds. I probably only miss a treatment about 3 times a year.
 
 5. When I do get sick, I rest, rest, rest to minimize the severity of the illness.
 
 6. I'm not sure how much this is related, but I drink a ton of water.
 
 7. Ditto saveferris on the less stressful job - I made a career change 3 years ago that requires fewer hours (40 instead of 50) and has tons of flexibility, so I can sleep in & come in late when I an run-down, etc, and I have time to fit in items 2-5. Oh, and I also do nebs in the car to save time.
 
 8. I didn't culture an CF bugs until I was a teen. First it was Staph, then the Staph went away and I started getting PA around age 24. Since starting colistin AND hypertonic saline (I was doing colistin w/out HS for a year), I seem to be back to Staph - I haven't cultured PA in almost 2 years, and I am culturing Staph again.
 
 I will admit that I am horrendous about airway clearance. I only do it when I am sick and can't exercise. I am trying to make a point to go to my car (at work) midday to do my acapella, but I rarely actually end up doing it.

alegris · Aug 1, 2009

In response to saveferris2009 about never being on IV's:

I don't really know why. Maybe a Canada thing? When I was a kid my doc told me I didn't need to go on IV's unless I get sick (like a cold or flu) and for whatever reason I never get colds. Maybe one a year, but never more than that. Also, in my younger days I didn't go in for regular appointments for years at a time (from about age 18 - 25). Those were my 'denial' years (no meds, no physio, no exercise). So no one would have known if I even needed IV's (my fault, I know). I started going back regularly in 2007 and my FEV1 was 54% then. Managed to get it up to 68% with exercise and hypertonic saline. But they haven't even mentioned IV's since I started going back. I'm curious now if it would help get my PFT's back up. I'll ask next month at my appointment.

alegris · Aug 1, 2009

In response to saveferris2009 about never being on IV's:

I don't really know why. Maybe a Canada thing? When I was a kid my doc told me I didn't need to go on IV's unless I get sick (like a cold or flu) and for whatever reason I never get colds. Maybe one a year, but never more than that. Also, in my younger days I didn't go in for regular appointments for years at a time (from about age 18 - 25). Those were my 'denial' years (no meds, no physio, no exercise). So no one would have known if I even needed IV's (my fault, I know). I started going back regularly in 2007 and my FEV1 was 54% then. Managed to get it up to 68% with exercise and hypertonic saline. But they haven't even mentioned IV's since I started going back. I'm curious now if it would help get my PFT's back up. I'll ask next month at my appointment.

alegris · Aug 1, 2009

In response to saveferris2009 about never being on IV's:

I don't really know why. Maybe a Canada thing? When I was a kid my doc told me I didn't need to go on IV's unless I get sick (like a cold or flu) and for whatever reason I never get colds. Maybe one a year, but never more than that. Also, in my younger days I didn't go in for regular appointments for years at a time (from about age 18 - 25). Those were my 'denial' years (no meds, no physio, no exercise). So no one would have known if I even needed IV's (my fault, I know). I started going back regularly in 2007 and my FEV1 was 54% then. Managed to get it up to 68% with exercise and hypertonic saline. But they haven't even mentioned IV's since I started going back. I'm curious now if it would help get my PFT's back up. I'll ask next month at my appointment.

alegris · Aug 1, 2009

In response to saveferris2009 about never being on IV's:

I don't really know why. Maybe a Canada thing? When I was a kid my doc told me I didn't need to go on IV's unless I get sick (like a cold or flu) and for whatever reason I never get colds. Maybe one a year, but never more than that. Also, in my younger days I didn't go in for regular appointments for years at a time (from about age 18 - 25). Those were my 'denial' years (no meds, no physio, no exercise). So no one would have known if I even needed IV's (my fault, I know). I started going back regularly in 2007 and my FEV1 was 54% then. Managed to get it up to 68% with exercise and hypertonic saline. But they haven't even mentioned IV's since I started going back. I'm curious now if it would help get my PFT's back up. I'll ask next month at my appointment.

alegris · Aug 1, 2009

In response to saveferris2009 about never being on IV's:
 
 I don't really know why. Maybe a Canada thing? When I was a kid my doc told me I didn't need to go on IV's unless I get sick (like a cold or flu) and for whatever reason I never get colds. Maybe one a year, but never more than that. Also, in my younger days I didn't go in for regular appointments for years at a time (from about age 18 - 25). Those were my 'denial' years (no meds, no physio, no exercise). So no one would have known if I even needed IV's (my fault, I know). I started going back regularly in 2007 and my FEV1 was 54% then. Managed to get it up to 68% with exercise and hypertonic saline. But they haven't even mentioned IV's since I started going back. I'm curious now if it would help get my PFT's back up. I'll ask next month at my appointment.

saveferris2009 · Aug 2, 2009

interesting ok. so you probably lost all that FEV1 from 18-25, that makes sense.

i know some docs just flat out don't treat infections aggressively, so i was fearful that was the type of doc you had. but it sounds like that's not the case at all.

thanks for taking the time to answer me.

saveferris2009 · Aug 2, 2009

interesting ok. so you probably lost all that FEV1 from 18-25, that makes sense.

i know some docs just flat out don't treat infections aggressively, so i was fearful that was the type of doc you had. but it sounds like that's not the case at all.

thanks for taking the time to answer me.

saveferris2009 · Aug 2, 2009

interesting ok. so you probably lost all that FEV1 from 18-25, that makes sense.

i know some docs just flat out don't treat infections aggressively, so i was fearful that was the type of doc you had. but it sounds like that's not the case at all.

thanks for taking the time to answer me.

saveferris2009 · Aug 2, 2009

interesting ok. so you probably lost all that FEV1 from 18-25, that makes sense.

i know some docs just flat out don't treat infections aggressively, so i was fearful that was the type of doc you had. but it sounds like that's not the case at all.

thanks for taking the time to answer me.

saveferris2009 · Aug 2, 2009

interesting ok. so you probably lost all that FEV1 from 18-25, that makes sense.
 
 i know some docs just flat out don't treat infections aggressively, so i was fearful that was the type of doc you had. but it sounds like that's not the case at all.
 
 thanks for taking the time to answer me.

Jana · Aug 2, 2009

Don't think I can give you a list like some of the others, but there are some similarities.

I am also very compliant with meds. About 10 years ago, after being quite sick with a PA infection, my lung capacity dropped by 20%. After that, I was put on Pulmozyme and month on/off Tobi, and the numbers came steadily back up over the next year.

I also do nebs in the car and don't skip them.

I'm a teacher, which doesn't fall into the non-stressful job category. However, my boss and other co-workers keep a close eye on me and always encourage me to not push too far. This is important for me as I can be slow to admit when it's time to give it up and get some extra rest.

I am a bit hit or miss about airway clearance since it involves a friend "beating me" rather than a vest. Periodically my pulmonary doctor cleans me out via bronchoscopy.

My doctors have slowly but surely over the years taught me the benefit of contacting them and going on meds early rather than waiting to get really sick.

I exercise several times a week, but have to admit my numbers were high even before I got into a good routine with that.

Honestly, after being very sick as a baby, I've always enjoyed good health by the standard of CF.

Jana · Aug 2, 2009

Don't think I can give you a list like some of the others, but there are some similarities.

I am also very compliant with meds. About 10 years ago, after being quite sick with a PA infection, my lung capacity dropped by 20%. After that, I was put on Pulmozyme and month on/off Tobi, and the numbers came steadily back up over the next year.

I also do nebs in the car and don't skip them.

I'm a teacher, which doesn't fall into the non-stressful job category. However, my boss and other co-workers keep a close eye on me and always encourage me to not push too far. This is important for me as I can be slow to admit when it's time to give it up and get some extra rest.

I am a bit hit or miss about airway clearance since it involves a friend "beating me" rather than a vest. Periodically my pulmonary doctor cleans me out via bronchoscopy.

My doctors have slowly but surely over the years taught me the benefit of contacting them and going on meds early rather than waiting to get really sick.

I exercise several times a week, but have to admit my numbers were high even before I got into a good routine with that.

Honestly, after being very sick as a baby, I've always enjoyed good health by the standard of CF.

Jana · Aug 2, 2009

Don't think I can give you a list like some of the others, but there are some similarities.

I am also very compliant with meds. About 10 years ago, after being quite sick with a PA infection, my lung capacity dropped by 20%. After that, I was put on Pulmozyme and month on/off Tobi, and the numbers came steadily back up over the next year.

I also do nebs in the car and don't skip them.

I'm a teacher, which doesn't fall into the non-stressful job category. However, my boss and other co-workers keep a close eye on me and always encourage me to not push too far. This is important for me as I can be slow to admit when it's time to give it up and get some extra rest.

I am a bit hit or miss about airway clearance since it involves a friend "beating me" rather than a vest. Periodically my pulmonary doctor cleans me out via bronchoscopy.

My doctors have slowly but surely over the years taught me the benefit of contacting them and going on meds early rather than waiting to get really sick.

I exercise several times a week, but have to admit my numbers were high even before I got into a good routine with that.

Honestly, after being very sick as a baby, I've always enjoyed good health by the standard of CF.

Jana · Aug 2, 2009

Don't think I can give you a list like some of the others, but there are some similarities.

I am also very compliant with meds. About 10 years ago, after being quite sick with a PA infection, my lung capacity dropped by 20%. After that, I was put on Pulmozyme and month on/off Tobi, and the numbers came steadily back up over the next year.

I also do nebs in the car and don't skip them.

I'm a teacher, which doesn't fall into the non-stressful job category. However, my boss and other co-workers keep a close eye on me and always encourage me to not push too far. This is important for me as I can be slow to admit when it's time to give it up and get some extra rest.

I am a bit hit or miss about airway clearance since it involves a friend "beating me" rather than a vest. Periodically my pulmonary doctor cleans me out via bronchoscopy.

My doctors have slowly but surely over the years taught me the benefit of contacting them and going on meds early rather than waiting to get really sick.

I exercise several times a week, but have to admit my numbers were high even before I got into a good routine with that.

Honestly, after being very sick as a baby, I've always enjoyed good health by the standard of CF.

Jana · Aug 2, 2009

Don't think I can give you a list like some of the others, but there are some similarities.
 
 I am also very compliant with meds. About 10 years ago, after being quite sick with a PA infection, my lung capacity dropped by 20%. After that, I was put on Pulmozyme and month on/off Tobi, and the numbers came steadily back up over the next year.
 
 I also do nebs in the car and don't skip them.
 
 I'm a teacher, which doesn't fall into the non-stressful job category. However, my boss and other co-workers keep a close eye on me and always encourage me to not push too far. This is important for me as I can be slow to admit when it's time to give it up and get some extra rest.
 
 I am a bit hit or miss about airway clearance since it involves a friend "beating me" rather than a vest. Periodically my pulmonary doctor cleans me out via bronchoscopy.
 
 My doctors have slowly but surely over the years taught me the benefit of contacting them and going on meds early rather than waiting to get really sick.
 
 I exercise several times a week, but have to admit my numbers were high even before I got into a good routine with that.
 
 Honestly, after being very sick as a baby, I've always enjoyed good health by the standard of CF.

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