Amazing PFTs

robbiekay · Sep 16, 2011

I knew It, thanks for confirming <img src="i/expressions/face-icon-small-smile.gif" border="0">

robbiekay · Sep 16, 2011

Thanks, My son is turning 21 on sat. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have never been able to get him to excersize mostly due to problems with size of of his spleen being so enlarged causing him allot of pain (complicated, dirrent story) in his defence. His father and I have always made excersize an important part our day, As well as eating healthy. We have worked hard to install these values in our family, most importantly our son. Well, he refused to have any thing to do with excersize, like I said mostly due to pain or uncomfortableness from his spleen. BUT now he has had surgery and the problem spleen has been removed<img src="i/expressions/face-icon-small-smile.gif" border="0">. He looks fabulous and feels great, better than ever before!<img src="i/expressions/face-icon-small-smile.gif" border="0">I am very happy for him. Mike has a new lease on life now, and I really hope to see the attitude towards excersize change. I know this will add quality and years to his life. His dad has been going on 3 mile walk with him every day when he gets home from work and Mike has been very compliant about going. His dad hopes to start running with him soon. This is my long way of saying THANK YOU! This post will be shown to my son<img src="i/expressions/face-icon-small-wink.gif" border="0"> along with all your great responses. You are truley an inspiration. PS. We have a pool in our back yard*now I am being a snitch* YOU MAKE SO VERY HAPPY, I AM SO VERY HAPPY! (keep bragging it is encouraging)

robbiekay · Sep 16, 2011

Thanks, My son is turning 21 on sat. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have never been able to get him to excersize mostly due to problems with size of of his spleen being so enlarged causing him allot of pain (complicated, dirrent story) in his defence. His father and I have always made excersize an important part our day, As well as eating healthy. We have worked hard to install these values in our family, most importantly our son. Well, he refused to have any thing to do with excersize, like I said mostly due to pain or uncomfortableness from his spleen. BUT now he has had surgery and the problem spleen has been removed<img src="i/expressions/face-icon-small-smile.gif" border="0">. He looks fabulous and feels great, better than ever before!<img src="i/expressions/face-icon-small-smile.gif" border="0">I am very happy for him. Mike has a new lease on life now, and I really hope to see the attitude towards excersize change. I know this will add quality and years to his life. His dad has been going on 3 mile walk with him every day when he gets home from work and Mike has been very compliantabout going. His dad hopes to start running with him soon. This is my long way of saying THANK YOU! This post will be shown to my son<img src="i/expressions/face-icon-small-wink.gif" border="0"> along with all your great responses. You are truley an inspiration.PS. We have a pool in our back yard*now I am being a snitch*YOU MAKE SO VERY HAPPY, I AM SO VERY HAPPY! (keep bragging it is encouraging)

robbiekay · Sep 16, 2011

Thanks, My son is turning 21 on sat. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have never been able to get him to excersize mostly due to problems with size of of his spleen being so enlarged causing him allot of pain (complicated, dirrent story) in his defence. His father and I have always made excersize an important part our day, As well as eating healthy. We have worked hard to install these values in our family, most importantly our son. Well, he refused to have any thing to do with excersize, like I said mostly due to pain or uncomfortableness from his spleen. BUT now he has had surgery and the problem spleen has been removed<img src="i/expressions/face-icon-small-smile.gif" border="0">. He looks fabulous and feels great, better than ever before!<img src="i/expressions/face-icon-small-smile.gif" border="0">I am very happy for him. Mike has a new lease on life now, and I really hope to see the attitude towards excersize change. I know this will add quality and years to his life. His dad has been going on 3 mile walk with him every day when he gets home from work and Mike has been very compliantabout going. His dad hopes to start running with him soon. This is my long way of saying THANK YOU! This post will be shown to my son<img src="i/expressions/face-icon-small-wink.gif" border="0"> along with all your great responses. You are truley an inspiration.PS. We have a pool in our back yard*now I am being a snitch*YOU MAKE SO VERY HAPPY, I AM SO VERY HAPPY! (keep bragging it is encouraging)

all4Eden · Sep 16, 2011

My daughter is 9 years old. She was diagnosed with CF at 6mos. Since them, we have being on this disease like fly on you know what. One thing that I have notice is the individuals that live past the average life expectancy are the ones who are fitness nuts and physically active. So, we are trying to get her started in this kind of regimen. Hopefully this habit will stay with her beyond adulthood.

all4Eden · Sep 16, 2011

My daughter is 9 years old. She was diagnosed with CF at 6mos. Since them, we have being on this disease like fly on you know what. One thing that I have notice is the individuals that live past the average life expectancy are the ones who are fitness nuts and physically active. So, we are trying to get her started in this kind of regimen. Hopefully this habit will stay with her beyond adulthood.

all4Eden · Sep 16, 2011

My daughter is 9 years old. She was diagnosed with CF at 6mos. Since them, we have being on this disease like fly on you know what. One thing that I have notice is the individuals that live past the average life expectancy are the ones who are fitness nuts and physically active. So, we are trying to get her started in this kind of regimen. Hopefully this habit will stay with her beyond adulthood.

Havoc · Sep 16, 2011

Another thread was created, but now the posts are catching up on this one. I will copy my reply: I do have mild bronchiectasis.
 
 Sadly, I don't have the graph of all the PFT's, I just saw it in my chart. I do have my most recent numbers, though:
 
 FVC: 6.09L Measured (Reference 5.03L) %Ref 121
 FEV1: 5.01L Measured (Reference 4.01L) %Ref 125
 FEV25-75%: 82 (Reference 79)
 PEF L/sec: 18.74L/sec Measured (Reference 9.12L/sec) %Ref 206
 That's based on 172cm and 65.5kg.
 
 A few weeks ago, I began taking azithromycin 3 times a week, but
before this I never took any prophylactic antibiotics, inhaled or oral.
I have done Tobi a few times, but it's usually after an exacerbation.
 
 I tried both pulmozyme and HTS and didn't like either, so none of
that. I do use a Qvar inhaler (beclomethasone) and Flonase daily. I
have an albuterol inhaler if I have a particularly bad day, but I rarely
use it now that I'm farther outside of the city.
 
 I typically culture pan-sensitive Pseudomonas and sometimes regular
staph A. (sometimes H Flu). I didn't culture Pseudomonas until age 23.
I have had 4 PICC lines. My first was when I was 25 and ended up with
pneumonia (sadly, it was probably acquired at the gym where I was trying
to make myself more healthy). My next 2 PICCs came in the same year
from sinus surgeries with complications (I was 29). I just had a PICC
last month from another pulmonary exacerbation (age 30).
 
 I do not vest, flutter, acapella, or PEP. I do hike, bike, play volleyball, P90X and swim.
 I never produce a lot of sputum, CPT never produces a cough for me
(I don't have that constant CF cough). A 20 mile bike ride does,
sometimes. So I stick to exercises that I like.
 
 Retaining/regaining lung function is directly linked to exercise. We
also had a discussion in another thread about people with reasonably
low FEV1, yet doing half-marathons. The hypothesis is that with
exercise your entire cardio-vascular system becomes more efficient at
delivering oxygen to the muscles and brain and can therefore get away
with less of a volume of oxygen to exchange in the lungs.

 I'm very encouraged to see other people exercising and noticing a difference. I'm still thinking of ways we might be able to keep each other motivated. I wanted to add a bit to my reply: While I get away with very little in the way of maintenance treatment, it obviously isn't going to be an option for everyone. Don't completely abandon your maintenance treatments in favor of just exercise. I think the reason that I've been able to get away with almost no treatment is how active I was as a child and through my 20's and probably a bit of luck. As a kid I was very, very active. Gymnastics, rollerblading, biking, swimming etc. Which hopefully will encourage all you younger guys and all of you parents with youngsters, to really make an effort to stay active. To those of you who are older (like me), try and work in exercise perhaps even while you do a treatment. HTS and a treadmill maybe? Then up the pace after your treatment for 20 minutes.

Havoc · Sep 16, 2011

Another thread was created, but now the posts are catching up on this one. I will copy my reply: I do have mild bronchiectasis.
 
 Sadly, I don't have the graph of all the PFT's, I just saw it in my chart. I do have my most recent numbers, though:
 
 FVC: 6.09L Measured (Reference 5.03L) %Ref 121
 FEV1: 5.01L Measured (Reference 4.01L) %Ref 125
 FEV25-75%: 82 (Reference 79)
 PEF L/sec: 18.74L/sec Measured (Reference 9.12L/sec) %Ref 206
 That's based on 172cm and 65.5kg.
 
 A few weeks ago, I began taking azithromycin 3 times a week, but
before this I never took any prophylactic antibiotics, inhaled or oral.
I have done Tobi a few times, but it's usually after an exacerbation.
 
 I tried both pulmozyme and HTS and didn't like either, so none of
that. I do use a Qvar inhaler (beclomethasone) and Flonase daily. I
have an albuterol inhaler if I have a particularly bad day, but I rarely
use it now that I'm farther outside of the city.
 
 I typically culture pan-sensitive Pseudomonas and sometimes regular
staph A. (sometimes H Flu). I didn't culture Pseudomonas until age 23.
I have had 4 PICC lines. My first was when I was 25 and ended up with
pneumonia (sadly, it was probably acquired at the gym where I was trying
to make myself more healthy). My next 2 PICCs came in the same year
from sinus surgeries with complications (I was 29). I just had a PICC
last month from another pulmonary exacerbation (age 30).
 
 I do not vest, flutter, acapella, or PEP. I do hike, bike, play volleyball, P90X and swim.
 I never produce a lot of sputum, CPT never produces a cough for me
(I don't have that constant CF cough). A 20 mile bike ride does,
sometimes. So I stick to exercises that I like.
 
 Retaining/regaining lung function is directly linked to exercise. We
also had a discussion in another thread about people with reasonably
low FEV1, yet doing half-marathons. The hypothesis is that with
exercise your entire cardio-vascular system becomes more efficient at
delivering oxygen to the muscles and brain and can therefore get away
with less of a volume of oxygen to exchange in the lungs.

 I'm very encouraged to see other people exercising and noticing a difference. I'm still thinking of ways we might be able to keep each other motivated. I wanted to add a bit to my reply: While I get away with very little in the way of maintenance treatment, it obviously isn't going to be an option for everyone. Don't completely abandon your maintenance treatments in favor of just exercise. I think the reason that I've been able to get away with almost no treatment is how active I was as a child and through my 20's and probably a bit of luck. As a kid I was very, very active. Gymnastics, rollerblading, biking, swimming etc. Which hopefully will encourage all you younger guys and all of you parents with youngsters, to really make an effort to stay active. To those of you who are older (like me), try and work in exercise perhaps even while you do a treatment. HTS and a treadmill maybe? Then up the pace after your treatment for 20 minutes.

Havoc · Sep 16, 2011

Another thread was created, but now the posts are catching up on this one. I will copy my reply: I do have mild bronchiectasis.
 
 Sadly, I don't have the graph of all the PFT's, I just saw it in my chart. I do have my most recent numbers, though:
 
 FVC: 6.09L Measured (Reference 5.03L) %Ref 121
 FEV1: 5.01L Measured (Reference 4.01L) %Ref 125
 FEV25-75%: 82 (Reference 79)
 PEF L/sec: 18.74L/sec Measured (Reference 9.12L/sec) %Ref 206
 That's based on 172cm and 65.5kg.
 
 A few weeks ago, I began taking azithromycin 3 times a week, but
before this I never took any prophylactic antibiotics, inhaled or oral.
I have done Tobi a few times, but it's usually after an exacerbation.
 
 I tried both pulmozyme and HTS and didn't like either, so none of
that. I do use a Qvar inhaler (beclomethasone) and Flonase daily. I
have an albuterol inhaler if I have a particularly bad day, but I rarely
use it now that I'm farther outside of the city.
 
 I typically culture pan-sensitive Pseudomonas and sometimes regular
staph A. (sometimes H Flu). I didn't culture Pseudomonas until age 23.
I have had 4 PICC lines. My first was when I was 25 and ended up with
pneumonia (sadly, it was probably acquired at the gym where I was trying
to make myself more healthy). My next 2 PICCs came in the same year
from sinus surgeries with complications (I was 29). I just had a PICC
last month from another pulmonary exacerbation (age 30).
 
 I do not vest, flutter, acapella, or PEP. I do hike, bike, play volleyball, P90X and swim.
 I never produce a lot of sputum, CPT never produces a cough for me
(I don't have that constant CF cough). A 20 mile bike ride does,
sometimes. So I stick to exercises that I like.
 
 Retaining/regaining lung function is directly linked to exercise. We
also had a discussion in another thread about people with reasonably
low FEV1, yet doing half-marathons. The hypothesis is that with
exercise your entire cardio-vascular system becomes more efficient at
delivering oxygen to the muscles and brain and can therefore get away
with less of a volume of oxygen to exchange in the lungs.

 I'm very encouraged to see other people exercising and noticing a difference. I'm still thinking of ways we might be able to keep each other motivated. I wanted to add a bit to my reply: While I get away with very little in the way of maintenance treatment, it obviously isn't going to be an option for everyone. Don't completely abandon your maintenance treatments in favor of just exercise. I think the reason that I've been able to get away with almost no treatment is how active I was as a child and through my 20's and probably a bit of luck. As a kid I was very, very active. Gymnastics, rollerblading, biking, swimming etc. Which hopefully will encourage all you younger guys and all of you parents with youngsters, to really make an effort to stay active. To those of you who are older (like me), try and work in exercise perhaps even while you do a treatment. HTS and a treadmill maybe? Then up the pace after your treatment for 20 minutes.

welshwitch · Sep 16, 2011

I'm loving all these posts and agree with it all. I feel like every CFer should be encouraged to become a SERIOUS athlete (if they are able, of course). Obviously we need to take our meds and do our treatments, but think about all the hospital time and $$ on meds we can avoid if we can kick CF's a$$ with this regimen.

I just got back from a 50 minute run on the beach myself....giving my lungs a daily cleanout -- it is a DETOX--SWEATING THE MUCUS OUT! It is my church.

Keep it up, all.

welshwitch · Sep 16, 2011

I'm loving all these posts and agree with it all. I feel like every CFer should be encouraged to become a SERIOUS athlete (if they are able, of course). Obviously we need to take our meds and do our treatments, but think about all the hospital time and $$ on meds we can avoid if we can kick CF's a$$ with this regimen.

I just got back from a 50 minute run on the beach myself....giving my lungs a daily cleanout -- it is a DETOX--SWEATING THE MUCUS OUT! It is my church.

Keep it up, all.

welshwitch · Sep 16, 2011

I'm loving all these posts and agree with it all. I feel like every CFer should be encouraged to become a SERIOUS athlete (if they are able, of course). Obviously we need to take our meds and do our treatments, but think about all the hospital time and $$ on meds we can avoid if we can kick CF's a$$ with this regimen.
 
 I just got back from a 50 minute run on the beach myself....giving my lungs a daily cleanout -- it is a DETOX--SWEATING THE MUCUS OUT! It is my church.
 
 Keep it up, all.

franzie2984 · Sep 18, 2011

Hey, that's great news for you!!! I am also trying to increase my PFTs. How long has it been since your lowest numbers and now? I am now in the high 80s/ low 90s and would like to see them back over 100%. My CF doctor told me he would be happy if I "just maintain" the 90 ish %. Screw that! I was extremely angry that he said that to me first off and secondly believe that I can increase them. <div> </div><div>I used to run A LOT more than currently (I ran a half marathon etc...). I have some problems with stamina and working out that I hope to resolve by slowly increasing the intensity/amounts. What specifically did you do first and increase from? Did you have issues with wheezing and shortness of breath at first?</div><div> </div><div>Just extremely curious <img src="i/expressions/face-icon-small-smile.gif" border="0">. </div><div> </div><div>Sarah~</div>

franzie2984 · Sep 18, 2011

Hey, that's great news for you!!! I am also trying to increase my PFTs. How long has it been since your lowest numbers and now? I am now in the high 80s/ low 90s and would like to see them back over 100%. My CF doctor told me he would be happy if I "just maintain" the 90 ish %. Screw that! I was extremely angry that he said that to me first off and secondly believe that I can increase them. I used to run A LOT more than currently (I ran a half marathon etc...). I have some problems with stamina and working out that I hope to resolve by slowly increasing the intensity/amounts. What specifically did you do first and increase from? Did you have issues with wheezing and shortness of breath at first? Just extremely curious <img src="i/expressions/face-icon-small-smile.gif" border="0">. Sarah~

franzie2984 · Sep 18, 2011

Hey, that's great news for you!!! I am also trying to increase my PFTs. How long has it been since your lowest numbers and now? I am now in the high 80s/ low 90s and would like to see them back over 100%. My CF doctor told me he would be happy if I "just maintain" the 90 ish %. Screw that! I was extremely angry that he said that to me first off and secondly believe that I can increase them. I used to run A LOT more than currently (I ran a half marathon etc...). I have some problems with stamina and working out that I hope to resolve by slowly increasing the intensity/amounts. What specifically did you do first and increase from? Did you have issues with wheezing and shortness of breath at first? Just extremely curious <img src="i/expressions/face-icon-small-smile.gif" border="0">. Sarah~

franzie2984 · Sep 18, 2011

I just realized your subtitle says "since 2005" so disregard that part.

franzie2984 · Sep 18, 2011

I just realized your subtitle says "since 2005" so disregard that part.

franzie2984 · Sep 18, 2011

I just realized your subtitle says "since 2005" so disregard that part.

Havoc · Sep 19, 2011

Actually my 2005 numbers were just a little shy of where I am now. My numbers took a dive between 2008-2010. Like you, I was low 90/upper 80 with my FEV1. This was all secondary to ABPA and a wicked case of sinusitis, which required 3 surgeries.

I understand what your doc is trying to say, but I agree that it's crap to settle for a FEV1 and not try to improve.

I don't remember really making a point to raise my PFT's, I just wanted to get back to normal. The first thing I did was join a gym to get in shape and put on some weight. I lifted 3 days a week for an hour. During this time I had a personal trainer to keep me on track. I gained about 5 pounds of muscle. After that I got back to the things I like to do. Games of ultimate frisbee, running the track with my EMT partner at work when we were bored, volleyball, swimming (mostly while boating on the lake), biking, hiking etc.

I would think that with numbers in the low 90's most of your stamina issues should be corrected with conditioning. If you plan on going back to running, I would suggest leaving intensity alone (at least your legs) and go for distance.

I've never really had a problem with wheezing or SOB when I'm not sick. The only exception was with HTS. I went from being able to run 5 miles without stopping to barely 1/4 mile and my lungs were on fire. I stopped it immediately and everything returned to normal. Pulmozyme and Tobi both caused a chronic cough and Pulmozyme went on to cause me to lose my voice completely. I never went back to pulmozyme either. I've done Tobi 4 times, I think. It's usually during or on the tail end of an exacerbation and if I don't have one already, it causes a cough. I tried Cayston once thinking maybe I should be doing prophylactics and it was worse than the Tobi as far as a cough and irritation.

One thing that I learned from being around the fire station that might help a bit is: get some young friends. At work, (which sometimes is 24 hours or more if I sleep there) I am around a much younger demographic than I normally would be. Younger friends are more likely to be active and involved in activities that promote an active lifestyle. Keep the older friends around for social and intellectual stuff. Most of the guys I play volleyball with are still in high school. Not good for social stuff, but great if you want to have a game of Ultimate or basketball.

Cheers and good luck!

Amazing PFTs

New member

New member

New member

New member

all4Eden

Guest

all4Eden

Guest

all4Eden

Guest

New member

New member

New member

welshwitch

Guest

welshwitch

Guest

welshwitch

Guest

Member

Member

Member

Member

Member

Member

New member