Anyone been at 30% for a year or more and managed to turn it around?

[jspaceman]

Hello,<div><br></div><div>I've been hovering at around 30% lung function for a few years now. Despite this, I feel pretty good most of the time. I generally have one or two rounds of iv's each year and that is about it. </div><div><br></div><div>I have made some major dietary changes like cutting out most sugar and juicing green veggies every day. I also hit the treadmill for 40 mins every morning without fail. I work full time (self employed) and generally feel like I am pretty healthy, apart from my crappy lungs.</div><div><br></div><div>My question is this: is there anyone out there who has been at or around 30% for a year or more (relatively stable), who has been able to significantly improve their lung function? </div><div><br></div><div>If so, how did you do it? I often read of people who experience significant fluctuations in lung function at higher levels (e.g. people who jump up and down between 50-70% etc). What I am interested to know is whether anyone has had such an increase from a low, but relatively stable and sustained lung function?</div><div><br></div><div>Thanks for your help!</div><div><br></div><div>Cheers,</div><div>Jason</div>

 

[jspaceman]

Hello,<br>I've been hovering at around 30% lung function for a few years now. Despite this, I feel pretty good most of the time. I generally have one or two rounds of iv's each year and that is about it.<br>I have made some major dietary changes like cutting out most sugar and juicing green veggies every day. I also hit the treadmill for 40 mins every morning without fail. I work full time (self employed) and generally feel like I am pretty healthy, apart from my crappy lungs.<br>My question is this: is there anyone out there who has been at or around 30% for a year or more (relatively stable), who has been able to significantly improve their lung function?<br>If so, how did you do it? I often read of people who experience significant fluctuations in lung function at higher levels (e.g. people who jump up and down between 50-70% etc). What I am interested to know is whether anyone has had such an increase from a low, but relatively stable and sustained lung function?<br>Thanks for your help!<br>Cheers,Jason

 

[jspaceman]

Hello,<br>I've been hovering at around 30% lung function for a few years now. Despite this, I feel pretty good most of the time. I generally have one or two rounds of iv's each year and that is about it.<br>I have made some major dietary changes like cutting out most sugar and juicing green veggies every day. I also hit the treadmill for 40 mins every morning without fail. I work full time (self employed) and generally feel like I am pretty healthy, apart from my crappy lungs.<br>My question is this: is there anyone out there who has been at or around 30% for a year or more (relatively stable), who has been able to significantly improve their lung function?<br>If so, how did you do it? I often read of people who experience significant fluctuations in lung function at higher levels (e.g. people who jump up and down between 50-70% etc). What I am interested to know is whether anyone has had such an increase from a low, but relatively stable and sustained lung function?<br>Thanks for your help!<br>Cheers,Jason

 

[InhalingHope]

I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21 months which is unheard of for me.

Remember change doesn't happen over night. You have been in the 30s for a year so it will most likely take at least a year to see a difference. I am not sure what you already do, but here is what worked for me.

1. You would have to discuss this with your doc, but the second I get a cold I start orals even if it hasn't traveled to my lungs yet and I also start Cayston (I can't use tobi or colistin anymore) regardless of where I am in my month off. The reason for this is EVERY cold I ever get leads to a lung infection. Treating it immediately prevents me from losing lung function which is so hard to get back. I know this may lead to resistance issues, but since I am rarely on IVs (like you) I figure I will use IVs when orals don't work anymore.
2. The biggest and most important change was exercise which is when I saw the biggest change in my numbers after about 6 months of regular exercise. I personally swim, but any exercise will do. I started so slow and felt like the biggest loser in the gym because I could barely swim a lap without taking a break. I am now up to 45 minutes of swimming without needed any time of break so stick with it!
3. Lastly, I added an extra treatment a day which includes an extra albuterol and HTS. Because of this I am clearing mucus out of my lungs multiple times a day with treatments and exercise which prevents buildup in my lungs.

The fact that you feel relatively well for your l.f. is a HUGE plus because you will have the energy to exercise and make changes! Good luck!!!

 

[InhalingHope]

I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21 months which is unheard of for me.

Remember change doesn't happen over night. You have been in the 30s for a year so it will most likely take at least a year to see a difference. I am not sure what you already do, but here is what worked for me.

1. You would have to discuss this with your doc, but the second I get a cold I start orals even if it hasn't traveled to my lungs yet and I also start Cayston (I can't use tobi or colistin anymore) regardless of where I am in my month off. The reason for this is EVERY cold I ever get leads to a lung infection. Treating it immediately prevents me from losing lung function which is so hard to get back. I know this may lead to resistance issues, but since I am rarely on IVs (like you) I figure I will use IVs when orals don't work anymore.
2. The biggest and most important change was exercise which is when I saw the biggest change in my numbers after about 6 months of regular exercise. I personally swim, but any exercise will do. I started so slow and felt like the biggest loser in the gym because I could barely swim a lap without taking a break. I am now up to 45 minutes of swimming without needed any time of break so stick with it!
3. Lastly, I added an extra treatment a day which includes an extra albuterol and HTS. Because of this I am clearing mucus out of my lungs multiple times a day with treatments and exercise which prevents buildup in my lungs.

The fact that you feel relatively well for your l.f. is a HUGE plus because you will have the energy to exercise and make changes! Good luck!!!

 

[InhalingHope]

I wasn't consistently in the 30's, but I was consistently in the 40s for about 6 years. I would dip as low as 30 and as would sometimes hit 50s. Over the past year I was able to get my lung function consistently in the high 50s and am hoping to hit 60s soon. I have also been off IVs for 21 months which is unheard of for me.
<br />
<br />Remember change doesn't happen over night. You have been in the 30s for a year so it will most likely take at least a year to see a difference. I am not sure what you already do, but here is what worked for me.
<br />
<br />1. You would have to discuss this with your doc, but the second I get a cold I start orals even if it hasn't traveled to my lungs yet and I also start Cayston (I can't use tobi or colistin anymore) regardless of where I am in my month off. The reason for this is EVERY cold I ever get leads to a lung infection. Treating it immediately prevents me from losing lung function which is so hard to get back. I know this may lead to resistance issues, but since I am rarely on IVs (like you) I figure I will use IVs when orals don't work anymore.
<br />2. The biggest and most important change was exercise which is when I saw the biggest change in my numbers after about 6 months of regular exercise. I personally swim, but any exercise will do. I started so slow and felt like the biggest loser in the gym because I could barely swim a lap without taking a break. I am now up to 45 minutes of swimming without needed any time of break so stick with it!
<br />3. Lastly, I added an extra treatment a day which includes an extra albuterol and HTS. Because of this I am clearing mucus out of my lungs multiple times a day with treatments and exercise which prevents buildup in my lungs.
<br />
<br />The fact that you feel relatively well for your l.f. is a HUGE plus because you will have the energy to exercise and make changes! Good luck!!!

 

[jspaceman]

Thanks for your response and congratulations on your achievement.<div><br></div><div>I know for a fact that there are people with cf who have managed to reclaim significant portions of their lung function from a very low base. </div><div><br></div><div>I was hoping that some of them would visit this site from time to time to pass on some tips as to how they did it?</div><div><br></div><div>Anyone? </div>

 

[jspaceman]

Thanks for your response and congratulations on your achievement.<br>I know for a fact that there are people with cf who have managed to reclaim significant portions of their lung function from a very low base.<br>I was hoping that some of them would visit this site from time to time to pass on some tips as to how they did it?<br>Anyone?

 

[jspaceman]

Thanks for your response and congratulations on your achievement.<br>I know for a fact that there are people with cf who have managed to reclaim significant portions of their lung function from a very low base.<br>I was hoping that some of them would visit this site from time to time to pass on some tips as to how they did it?<br>Anyone?