What next?

[JenWren]

Hey laura:

The word defeat and CF have never in my experience gone hand in hand.

Give up , no such luck. I think the key here is to re invent a new base line. Remember we are going to naturally change as we get older anyway. This is the only downfall to following the numbers to closely to me. Like Sevenstars says if you feel better and the numbers aren't showing it well that says a lot . As a woman in her twenties, I jogged, rode a bike, hiked, as a woman in my 30's keeping house was a chore, as a Woman in my 40 close to 50, Damn ,of course there is going to be a new base line as the years go bye. I try not to let it get me down and just try to find those things that I can do and master new things. Well, I just felt like since I couldn't give you great advice I would give you a little bit of a pep talk.

I had a bronch done about 12 -15 years ago and it was not a good experience. They found nothing new.

Don't forget about hollistic approaches to healing, like meditation and yoga, and Reiki. Very important and beneficial. They can help improve lung function and in addition be good for the mind and spirit. While I was in the hospital back in Feb. I had a guy come and teach me some Rieki breathing positions to strengthen the lungs. My intake actually improved after a month of these exercises. I wasn't surprised. I fully believe in these practices and I say we should learn these techniques earlier so we can master them and as a result prolong our lives or at least better our physical and mental functions.

I hope this helps.

JenWren<img src="i/expressions/rose.gif" border="0">

 

[JenWren]

Hey laura:

The word defeat and CF have never in my experience gone hand in hand.

Give up , no such luck. I think the key here is to re invent a new base line. Remember we are going to naturally change as we get older anyway. This is the only downfall to following the numbers to closely to me. Like Sevenstars says if you feel better and the numbers aren't showing it well that says a lot . As a woman in her twenties, I jogged, rode a bike, hiked, as a woman in my 30's keeping house was a chore, as a Woman in my 40 close to 50, Damn ,of course there is going to be a new base line as the years go bye. I try not to let it get me down and just try to find those things that I can do and master new things. Well, I just felt like since I couldn't give you great advice I would give you a little bit of a pep talk.

I had a bronch done about 12 -15 years ago and it was not a good experience. They found nothing new.

Don't forget about hollistic approaches to healing, like meditation and yoga, and Reiki. Very important and beneficial. They can help improve lung function and in addition be good for the mind and spirit. While I was in the hospital back in Feb. I had a guy come and teach me some Rieki breathing positions to strengthen the lungs. My intake actually improved after a month of these exercises. I wasn't surprised. I fully believe in these practices and I say we should learn these techniques earlier so we can master them and as a result prolong our lives or at least better our physical and mental functions.

I hope this helps.

JenWren<img src="i/expressions/rose.gif" border="0">

 

[JenWren]

Hey laura:

The word defeat and CF have never in my experience gone hand in hand.

Give up , no such luck. I think the key here is to re invent a new base line. Remember we are going to naturally change as we get older anyway. This is the only downfall to following the numbers to closely to me. Like Sevenstars says if you feel better and the numbers aren't showing it well that says a lot . As a woman in her twenties, I jogged, rode a bike, hiked, as a woman in my 30's keeping house was a chore, as a Woman in my 40 close to 50, Damn ,of course there is going to be a new base line as the years go bye. I try not to let it get me down and just try to find those things that I can do and master new things. Well, I just felt like since I couldn't give you great advice I would give you a little bit of a pep talk.

I had a bronch done about 12 -15 years ago and it was not a good experience. They found nothing new.

Don't forget about hollistic approaches to healing, like meditation and yoga, and Reiki. Very important and beneficial. They can help improve lung function and in addition be good for the mind and spirit. While I was in the hospital back in Feb. I had a guy come and teach me some Rieki breathing positions to strengthen the lungs. My intake actually improved after a month of these exercises. I wasn't surprised. I fully believe in these practices and I say we should learn these techniques earlier so we can master them and as a result prolong our lives or at least better our physical and mental functions.

I hope this helps.

JenWren<img src="i/expressions/rose.gif" border="0">

 

[JenWren]

Hey laura:

The word defeat and CF have never in my experience gone hand in hand.

Give up , no such luck. I think the key here is to re invent a new base line. Remember we are going to naturally change as we get older anyway. This is the only downfall to following the numbers to closely to me. Like Sevenstars says if you feel better and the numbers aren't showing it well that says a lot . As a woman in her twenties, I jogged, rode a bike, hiked, as a woman in my 30's keeping house was a chore, as a Woman in my 40 close to 50, Damn ,of course there is going to be a new base line as the years go bye. I try not to let it get me down and just try to find those things that I can do and master new things. Well, I just felt like since I couldn't give you great advice I would give you a little bit of a pep talk.

I had a bronch done about 12 -15 years ago and it was not a good experience. They found nothing new.

Don't forget about hollistic approaches to healing, like meditation and yoga, and Reiki. Very important and beneficial. They can help improve lung function and in addition be good for the mind and spirit. While I was in the hospital back in Feb. I had a guy come and teach me some Rieki breathing positions to strengthen the lungs. My intake actually improved after a month of these exercises. I wasn't surprised. I fully believe in these practices and I say we should learn these techniques earlier so we can master them and as a result prolong our lives or at least better our physical and mental functions.

I hope this helps.

JenWren<img src="i/expressions/rose.gif" border="0">

 

[JenWren]

Hey laura:
<br />
<br />The word defeat and CF have never in my experience gone hand in hand.
<br />
<br />Give up , no such luck. I think the key here is to re invent a new base line. Remember we are going to naturally change as we get older anyway. This is the only downfall to following the numbers to closely to me. Like Sevenstars says if you feel better and the numbers aren't showing it well that says a lot . As a woman in her twenties, I jogged, rode a bike, hiked, as a woman in my 30's keeping house was a chore, as a Woman in my 40 close to 50, Damn ,of course there is going to be a new base line as the years go bye. I try not to let it get me down and just try to find those things that I can do and master new things. Well, I just felt like since I couldn't give you great advice I would give you a little bit of a pep talk.
<br />
<br />I had a bronch done about 12 -15 years ago and it was not a good experience. They found nothing new.
<br />
<br />Don't forget about hollistic approaches to healing, like meditation and yoga, and Reiki. Very important and beneficial. They can help improve lung function and in addition be good for the mind and spirit. While I was in the hospital back in Feb. I had a guy come and teach me some Rieki breathing positions to strengthen the lungs. My intake actually improved after a month of these exercises. I wasn't surprised. I fully believe in these practices and I say we should learn these techniques earlier so we can master them and as a result prolong our lives or at least better our physical and mental functions.
<br />
<br />I hope this helps.
<br />
<br />JenWren<img src="i/expressions/rose.gif" border="0">

 

[kmaried]

Hi Laura,

I have sort of an inspirational story for you. Four years ago, I was at 49% FEV1. Since I had been on IV two-three times that year and a lot of oral abx, my doctor told me 50% should just be my new baseline. I was bummed. Over the next two years I was hardly on oral or IV abx and my pfts just slowly started to go up ~ now my baseline is about 65%. Sometimes we do just have a bad six months, year, two years... I didn't realize that at the time.

I do think some things helped to keep me off abx that I started in those two years - hs saline, and I was doing the clinical trial for AI (inhaled aztreonam) - which hopefully should be fda approved soon.

I just want to let you know that just because you're in a rut now, it might just be a temporary rut!

Best of luck & health!,
Kris
26 w cf

 

[kmaried]

Hi Laura,

I have sort of an inspirational story for you. Four years ago, I was at 49% FEV1. Since I had been on IV two-three times that year and a lot of oral abx, my doctor told me 50% should just be my new baseline. I was bummed. Over the next two years I was hardly on oral or IV abx and my pfts just slowly started to go up ~ now my baseline is about 65%. Sometimes we do just have a bad six months, year, two years... I didn't realize that at the time.

I do think some things helped to keep me off abx that I started in those two years - hs saline, and I was doing the clinical trial for AI (inhaled aztreonam) - which hopefully should be fda approved soon.

I just want to let you know that just because you're in a rut now, it might just be a temporary rut!

Best of luck & health!,
Kris
26 w cf

 

[kmaried]

Hi Laura,

I have sort of an inspirational story for you. Four years ago, I was at 49% FEV1. Since I had been on IV two-three times that year and a lot of oral abx, my doctor told me 50% should just be my new baseline. I was bummed. Over the next two years I was hardly on oral or IV abx and my pfts just slowly started to go up ~ now my baseline is about 65%. Sometimes we do just have a bad six months, year, two years... I didn't realize that at the time.

I do think some things helped to keep me off abx that I started in those two years - hs saline, and I was doing the clinical trial for AI (inhaled aztreonam) - which hopefully should be fda approved soon.

I just want to let you know that just because you're in a rut now, it might just be a temporary rut!

Best of luck & health!,
Kris
26 w cf

 

[kmaried]

Hi Laura,

I have sort of an inspirational story for you. Four years ago, I was at 49% FEV1. Since I had been on IV two-three times that year and a lot of oral abx, my doctor told me 50% should just be my new baseline. I was bummed. Over the next two years I was hardly on oral or IV abx and my pfts just slowly started to go up ~ now my baseline is about 65%. Sometimes we do just have a bad six months, year, two years... I didn't realize that at the time.

I do think some things helped to keep me off abx that I started in those two years - hs saline, and I was doing the clinical trial for AI (inhaled aztreonam) - which hopefully should be fda approved soon.

I just want to let you know that just because you're in a rut now, it might just be a temporary rut!

Best of luck & health!,
Kris
26 w cf

 

[kmaried]

Hi Laura,
<br />
<br />I have sort of an inspirational story for you. Four years ago, I was at 49% FEV1. Since I had been on IV two-three times that year and a lot of oral abx, my doctor told me 50% should just be my new baseline. I was bummed. Over the next two years I was hardly on oral or IV abx and my pfts just slowly started to go up ~ now my baseline is about 65%. Sometimes we do just have a bad six months, year, two years... I didn't realize that at the time.
<br />
<br />I do think some things helped to keep me off abx that I started in those two years - hs saline, and I was doing the clinical trial for AI (inhaled aztreonam) - which hopefully should be fda approved soon.
<br />
<br />I just want to let you know that just because you're in a rut now, it might just be a temporary rut!
<br />
<br />Best of luck & health!,
<br />Kris
<br />26 w cf

 

[tara]

Hi Laura,

I had a really rough three years (2005, 2006 and 2007) So I know how you feel when you're constantly sick, not feeling up to par and always on antibiotics. My old baseline was about 1.65 liters and my new baseline, those three years was 1.5 liters. It's a not a big difference in numbers, but it was a huge difference in quality of life. I was dropping below my new baseline about a week after my IV treatments. It was frustrating.

All this to say, in 2008 I started a couple new things and I'm back up to about 1.6 Liter baseline. Higher than I had been in three years! Again, not a huge jump numbers wise, but a huge jump quality of life wise.

I started vesting three times a day instead of two. I started back on Ibuprofin therapy and I started on unconventional inhaled antibiotics. I take two weeks of Aztreonam (IV) inhaled twice daily and two weeks of Ceftaz (IV) inhaled twice daily. I never have an off month. This has worked remarkably well for five months and counting!

I hope you are able to feel "restored" soon to your old self. Hang in there.

 

[tara]

Hi Laura,

I had a really rough three years (2005, 2006 and 2007) So I know how you feel when you're constantly sick, not feeling up to par and always on antibiotics. My old baseline was about 1.65 liters and my new baseline, those three years was 1.5 liters. It's a not a big difference in numbers, but it was a huge difference in quality of life. I was dropping below my new baseline about a week after my IV treatments. It was frustrating.

All this to say, in 2008 I started a couple new things and I'm back up to about 1.6 Liter baseline. Higher than I had been in three years! Again, not a huge jump numbers wise, but a huge jump quality of life wise.

I started vesting three times a day instead of two. I started back on Ibuprofin therapy and I started on unconventional inhaled antibiotics. I take two weeks of Aztreonam (IV) inhaled twice daily and two weeks of Ceftaz (IV) inhaled twice daily. I never have an off month. This has worked remarkably well for five months and counting!

I hope you are able to feel "restored" soon to your old self. Hang in there.

 

[tara]

Hi Laura,

I had a really rough three years (2005, 2006 and 2007) So I know how you feel when you're constantly sick, not feeling up to par and always on antibiotics. My old baseline was about 1.65 liters and my new baseline, those three years was 1.5 liters. It's a not a big difference in numbers, but it was a huge difference in quality of life. I was dropping below my new baseline about a week after my IV treatments. It was frustrating.

All this to say, in 2008 I started a couple new things and I'm back up to about 1.6 Liter baseline. Higher than I had been in three years! Again, not a huge jump numbers wise, but a huge jump quality of life wise.

I started vesting three times a day instead of two. I started back on Ibuprofin therapy and I started on unconventional inhaled antibiotics. I take two weeks of Aztreonam (IV) inhaled twice daily and two weeks of Ceftaz (IV) inhaled twice daily. I never have an off month. This has worked remarkably well for five months and counting!

I hope you are able to feel "restored" soon to your old self. Hang in there.

 

[tara]

Hi Laura,

I had a really rough three years (2005, 2006 and 2007) So I know how you feel when you're constantly sick, not feeling up to par and always on antibiotics. My old baseline was about 1.65 liters and my new baseline, those three years was 1.5 liters. It's a not a big difference in numbers, but it was a huge difference in quality of life. I was dropping below my new baseline about a week after my IV treatments. It was frustrating.

All this to say, in 2008 I started a couple new things and I'm back up to about 1.6 Liter baseline. Higher than I had been in three years! Again, not a huge jump numbers wise, but a huge jump quality of life wise.

I started vesting three times a day instead of two. I started back on Ibuprofin therapy and I started on unconventional inhaled antibiotics. I take two weeks of Aztreonam (IV) inhaled twice daily and two weeks of Ceftaz (IV) inhaled twice daily. I never have an off month. This has worked remarkably well for five months and counting!

I hope you are able to feel "restored" soon to your old self. Hang in there.

 

[tara]

Hi Laura,
<br />
<br />I had a really rough three years (2005, 2006 and 2007) So I know how you feel when you're constantly sick, not feeling up to par and always on antibiotics. My old baseline was about 1.65 liters and my new baseline, those three years was 1.5 liters. It's a not a big difference in numbers, but it was a huge difference in quality of life. I was dropping below my new baseline about a week after my IV treatments. It was frustrating.
<br />
<br />All this to say, in 2008 I started a couple new things and I'm back up to about 1.6 Liter baseline. Higher than I had been in three years! Again, not a huge jump numbers wise, but a huge jump quality of life wise.
<br />
<br />I started vesting three times a day instead of two. I started back on Ibuprofin therapy and I started on unconventional inhaled antibiotics. I take two weeks of Aztreonam (IV) inhaled twice daily and two weeks of Ceftaz (IV) inhaled twice daily. I never have an off month. This has worked remarkably well for five months and counting!
<br />
<br />I hope you are able to feel "restored" soon to your old self. Hang in there.

 

[Wheezie]

I don't have much to add - all of the posts so far offer excellent perspectives. But I'm going to ramble anyway...

I had a bad year, but bounced back, so like Kris and Skye said, this could just be a temporary (if lengthy) rut. I've also been told by my docs that numbers are just numbers and if I feel like I've improved, that's what really matters. If you focus TOO much on the numbers, it will take its toll emotionally, and that is never a good thing (as I believe emotional upset causes physical upset).

I also took Tara's advice with the inhaled antibiotics. I still do Tobi and Colistin, but I alternate every two weeks instead of every 28 days. Sometimes you just have to change up the meds or the scheduling - as we all know, what works for one doesn't always work for the other.

Hang in there, Laura. I hope things start to look up soon *hugs*

 

[Wheezie]

I don't have much to add - all of the posts so far offer excellent perspectives. But I'm going to ramble anyway...

I had a bad year, but bounced back, so like Kris and Skye said, this could just be a temporary (if lengthy) rut. I've also been told by my docs that numbers are just numbers and if I feel like I've improved, that's what really matters. If you focus TOO much on the numbers, it will take its toll emotionally, and that is never a good thing (as I believe emotional upset causes physical upset).

I also took Tara's advice with the inhaled antibiotics. I still do Tobi and Colistin, but I alternate every two weeks instead of every 28 days. Sometimes you just have to change up the meds or the scheduling - as we all know, what works for one doesn't always work for the other.

Hang in there, Laura. I hope things start to look up soon *hugs*

 

[Wheezie]

I don't have much to add - all of the posts so far offer excellent perspectives. But I'm going to ramble anyway...

I had a bad year, but bounced back, so like Kris and Skye said, this could just be a temporary (if lengthy) rut. I've also been told by my docs that numbers are just numbers and if I feel like I've improved, that's what really matters. If you focus TOO much on the numbers, it will take its toll emotionally, and that is never a good thing (as I believe emotional upset causes physical upset).

I also took Tara's advice with the inhaled antibiotics. I still do Tobi and Colistin, but I alternate every two weeks instead of every 28 days. Sometimes you just have to change up the meds or the scheduling - as we all know, what works for one doesn't always work for the other.

Hang in there, Laura. I hope things start to look up soon *hugs*

 

[Wheezie]

I don't have much to add - all of the posts so far offer excellent perspectives. But I'm going to ramble anyway...

I had a bad year, but bounced back, so like Kris and Skye said, this could just be a temporary (if lengthy) rut. I've also been told by my docs that numbers are just numbers and if I feel like I've improved, that's what really matters. If you focus TOO much on the numbers, it will take its toll emotionally, and that is never a good thing (as I believe emotional upset causes physical upset).

I also took Tara's advice with the inhaled antibiotics. I still do Tobi and Colistin, but I alternate every two weeks instead of every 28 days. Sometimes you just have to change up the meds or the scheduling - as we all know, what works for one doesn't always work for the other.

Hang in there, Laura. I hope things start to look up soon *hugs*

 

[Wheezie]

I don't have much to add - all of the posts so far offer excellent perspectives. But I'm going to ramble anyway...
<br />
<br />I had a bad year, but bounced back, so like Kris and Skye said, this could just be a temporary (if lengthy) rut. I've also been told by my docs that numbers are just numbers and if I feel like I've improved, that's what really matters. If you focus TOO much on the numbers, it will take its toll emotionally, and that is never a good thing (as I believe emotional upset causes physical upset).
<br />
<br />I also took Tara's advice with the inhaled antibiotics. I still do Tobi and Colistin, but I alternate every two weeks instead of every 28 days. Sometimes you just have to change up the meds or the scheduling - as we all know, what works for one doesn't always work for the other.
<br />
<br />Hang in there, Laura. I hope things start to look up soon *hugs*