Coughing stopped, strange feeling, no energy..what's going on?

[KaiserWilly]

Hello everyone,
This is my first question. I am 48 years old and have had "asthma" all my life. In November of 2006 I learned I have had CF the whole time but they couldn't figure it out.
My question is :

I used to cough a great deal and it was generally productive. I rarely slept well and always had to sleep cold otherwise I would cough all night. Recently I have generally stopped coughing and I feel like the sludge is adhering to the walls of the lungs and is not near as bulky as it was. This makes it a real effort to cough up but recently I just don't feel the need to cough but I do get out of breath frequently and have to lean over to catch my breath.

I sleep with O2 and use Pulmozyne and the AirVest. Recently finished IV antibiotics but this problem preceded the IV. My PFT is at 24% to 30%. They want to have me meet the transplant team but I would really like to prop these lungs up a while longer. What the heck is going on and if you have any ideas on tuning up with my existing parts I would love to hear them.

Thanks,
Kaiser Willy

 

[KaiserWilly]

Hello everyone,
This is my first question. I am 48 years old and have had "asthma" all my life. In November of 2006 I learned I have had CF the whole time but they couldn't figure it out.
My question is :

I used to cough a great deal and it was generally productive. I rarely slept well and always had to sleep cold otherwise I would cough all night. Recently I have generally stopped coughing and I feel like the sludge is adhering to the walls of the lungs and is not near as bulky as it was. This makes it a real effort to cough up but recently I just don't feel the need to cough but I do get out of breath frequently and have to lean over to catch my breath.

I sleep with O2 and use Pulmozyne and the AirVest. Recently finished IV antibiotics but this problem preceded the IV. My PFT is at 24% to 30%. They want to have me meet the transplant team but I would really like to prop these lungs up a while longer. What the heck is going on and if you have any ideas on tuning up with my existing parts I would love to hear them.

Thanks,
Kaiser Willy

 

[KaiserWilly]

Hello everyone,
This is my first question. I am 48 years old and have had "asthma" all my life. In November of 2006 I learned I have had CF the whole time but they couldn't figure it out.
My question is :

I used to cough a great deal and it was generally productive. I rarely slept well and always had to sleep cold otherwise I would cough all night. Recently I have generally stopped coughing and I feel like the sludge is adhering to the walls of the lungs and is not near as bulky as it was. This makes it a real effort to cough up but recently I just don't feel the need to cough but I do get out of breath frequently and have to lean over to catch my breath.

I sleep with O2 and use Pulmozyne and the AirVest. Recently finished IV antibiotics but this problem preceded the IV. My PFT is at 24% to 30%. They want to have me meet the transplant team but I would really like to prop these lungs up a while longer. What the heck is going on and if you have any ideas on tuning up with my existing parts I would love to hear them.

Thanks,
Kaiser Willy

 

[KaiserWilly]

Hello everyone,
This is my first question. I am 48 years old and have had "asthma" all my life. In November of 2006 I learned I have had CF the whole time but they couldn't figure it out.
My question is :

I used to cough a great deal and it was generally productive. I rarely slept well and always had to sleep cold otherwise I would cough all night. Recently I have generally stopped coughing and I feel like the sludge is adhering to the walls of the lungs and is not near as bulky as it was. This makes it a real effort to cough up but recently I just don't feel the need to cough but I do get out of breath frequently and have to lean over to catch my breath.

I sleep with O2 and use Pulmozyne and the AirVest. Recently finished IV antibiotics but this problem preceded the IV. My PFT is at 24% to 30%. They want to have me meet the transplant team but I would really like to prop these lungs up a while longer. What the heck is going on and if you have any ideas on tuning up with my existing parts I would love to hear them.

Thanks,
Kaiser Willy

 

[KaiserWilly]

Hello everyone,
This is my first question. I am 48 years old and have had "asthma" all my life. In November of 2006 I learned I have had CF the whole time but they couldn't figure it out.
My question is :

I used to cough a great deal and it was generally productive. I rarely slept well and always had to sleep cold otherwise I would cough all night. Recently I have generally stopped coughing and I feel like the sludge is adhering to the walls of the lungs and is not near as bulky as it was. This makes it a real effort to cough up but recently I just don't feel the need to cough but I do get out of breath frequently and have to lean over to catch my breath.

I sleep with O2 and use Pulmozyne and the AirVest. Recently finished IV antibiotics but this problem preceded the IV. My PFT is at 24% to 30%. They want to have me meet the transplant team but I would really like to prop these lungs up a while longer. What the heck is going on and if you have any ideas on tuning up with my existing parts I would love to hear them.

Thanks,
Kaiser Willy

 

[JazzysMom]

It sounds like typical CF progression. I am sure you have stuff there, but its just sticking to your lungs to much to come up easily.

It could also be reactive airways making you short of breath etc. Do you use Albeuterol or any bronchialdialtors?


BTW WELCOME

 

[JazzysMom]

It sounds like typical CF progression. I am sure you have stuff there, but its just sticking to your lungs to much to come up easily.

It could also be reactive airways making you short of breath etc. Do you use Albeuterol or any bronchialdialtors?


BTW WELCOME

 

[JazzysMom]

It sounds like typical CF progression. I am sure you have stuff there, but its just sticking to your lungs to much to come up easily.

It could also be reactive airways making you short of breath etc. Do you use Albeuterol or any bronchialdialtors?


BTW WELCOME

 

[JazzysMom]

It sounds like typical CF progression. I am sure you have stuff there, but its just sticking to your lungs to much to come up easily.

It could also be reactive airways making you short of breath etc. Do you use Albeuterol or any bronchialdialtors?


BTW WELCOME

 

[JazzysMom]

It sounds like typical CF progression. I am sure you have stuff there, but its just sticking to your lungs to much to come up easily.

It could also be reactive airways making you short of breath etc. Do you use Albeuterol or any bronchialdialtors?


BTW WELCOME

 

[Aspiemom]

I'm another person who was diagnosed late in life, so I don't have a lot of experience to share with you.

I was wondering if you do the Hypertonic Saline for helping loosen things or if your asthma is too bad to prevent it? Also, I just came off Prednisone because I was having a hard time getting my breath back after leaning over or coughing or anything - does Prednisone help you when you get like this?

I hope you can get to the bottom of it really soon! Keep us updated! Debbi

 

[Aspiemom]

I'm another person who was diagnosed late in life, so I don't have a lot of experience to share with you.

I was wondering if you do the Hypertonic Saline for helping loosen things or if your asthma is too bad to prevent it? Also, I just came off Prednisone because I was having a hard time getting my breath back after leaning over or coughing or anything - does Prednisone help you when you get like this?

I hope you can get to the bottom of it really soon! Keep us updated! Debbi

 

[Aspiemom]

I'm another person who was diagnosed late in life, so I don't have a lot of experience to share with you.

I was wondering if you do the Hypertonic Saline for helping loosen things or if your asthma is too bad to prevent it? Also, I just came off Prednisone because I was having a hard time getting my breath back after leaning over or coughing or anything - does Prednisone help you when you get like this?

I hope you can get to the bottom of it really soon! Keep us updated! Debbi

 

[Aspiemom]

I'm another person who was diagnosed late in life, so I don't have a lot of experience to share with you.

I was wondering if you do the Hypertonic Saline for helping loosen things or if your asthma is too bad to prevent it? Also, I just came off Prednisone because I was having a hard time getting my breath back after leaning over or coughing or anything - does Prednisone help you when you get like this?

I hope you can get to the bottom of it really soon! Keep us updated! Debbi

 

[Aspiemom]

I'm another person who was diagnosed late in life, so I don't have a lot of experience to share with you.

I was wondering if you do the Hypertonic Saline for helping loosen things or if your asthma is too bad to prevent it? Also, I just came off Prednisone because I was having a hard time getting my breath back after leaning over or coughing or anything - does Prednisone help you when you get like this?

I hope you can get to the bottom of it really soon! Keep us updated! Debbi

 

[coltsfan715]

To help you cough stuff up maybe try drinking more water. Also talk to your docs about hypertonic saline. Though I will say coming from someone who has been at a point with the low PFTs I would start with a low percent of the saline and try building up if you can. Maybe start at 3% and go to 5% and then to 7% or something. I started with 3% when I was at about 30% FEV1 and jumped to the 7% and ended up hurting my back from the coughing and had a VERY difficult time.

One thing that I found as my lungs got worse is that I had to double, triple and even quadruple the amount of time I spent doing CPT. I went from using my vest for 20-30 minutes to at times 2 hours straight to get ANY type of movement.

Also something else to consider with the low energy and shortness of breath is whether or not you should be using O2 more often - maybe all the time. I know when I started on O2 all the time I was VERY short of breath with most any activity no matter how light.

Also something else is watching your carbohydrate intake. If you have blood sugar issues that could be causing inflammation which can also contribute to shortness of breath.

Where do you live by the way - what Transplant Center are you doctors talking of sending you too? Just curious - I just had a transplant this May is why I ask.

Take Care and I hope you are able to find something to work for you.
Lindsey

 

[coltsfan715]

To help you cough stuff up maybe try drinking more water. Also talk to your docs about hypertonic saline. Though I will say coming from someone who has been at a point with the low PFTs I would start with a low percent of the saline and try building up if you can. Maybe start at 3% and go to 5% and then to 7% or something. I started with 3% when I was at about 30% FEV1 and jumped to the 7% and ended up hurting my back from the coughing and had a VERY difficult time.

One thing that I found as my lungs got worse is that I had to double, triple and even quadruple the amount of time I spent doing CPT. I went from using my vest for 20-30 minutes to at times 2 hours straight to get ANY type of movement.

Also something else to consider with the low energy and shortness of breath is whether or not you should be using O2 more often - maybe all the time. I know when I started on O2 all the time I was VERY short of breath with most any activity no matter how light.

Also something else is watching your carbohydrate intake. If you have blood sugar issues that could be causing inflammation which can also contribute to shortness of breath.

Where do you live by the way - what Transplant Center are you doctors talking of sending you too? Just curious - I just had a transplant this May is why I ask.

Take Care and I hope you are able to find something to work for you.
Lindsey

 

[coltsfan715]

To help you cough stuff up maybe try drinking more water. Also talk to your docs about hypertonic saline. Though I will say coming from someone who has been at a point with the low PFTs I would start with a low percent of the saline and try building up if you can. Maybe start at 3% and go to 5% and then to 7% or something. I started with 3% when I was at about 30% FEV1 and jumped to the 7% and ended up hurting my back from the coughing and had a VERY difficult time.

One thing that I found as my lungs got worse is that I had to double, triple and even quadruple the amount of time I spent doing CPT. I went from using my vest for 20-30 minutes to at times 2 hours straight to get ANY type of movement.

Also something else to consider with the low energy and shortness of breath is whether or not you should be using O2 more often - maybe all the time. I know when I started on O2 all the time I was VERY short of breath with most any activity no matter how light.

Also something else is watching your carbohydrate intake. If you have blood sugar issues that could be causing inflammation which can also contribute to shortness of breath.

Where do you live by the way - what Transplant Center are you doctors talking of sending you too? Just curious - I just had a transplant this May is why I ask.

Take Care and I hope you are able to find something to work for you.
Lindsey

 

[coltsfan715]

To help you cough stuff up maybe try drinking more water. Also talk to your docs about hypertonic saline. Though I will say coming from someone who has been at a point with the low PFTs I would start with a low percent of the saline and try building up if you can. Maybe start at 3% and go to 5% and then to 7% or something. I started with 3% when I was at about 30% FEV1 and jumped to the 7% and ended up hurting my back from the coughing and had a VERY difficult time.

One thing that I found as my lungs got worse is that I had to double, triple and even quadruple the amount of time I spent doing CPT. I went from using my vest for 20-30 minutes to at times 2 hours straight to get ANY type of movement.

Also something else to consider with the low energy and shortness of breath is whether or not you should be using O2 more often - maybe all the time. I know when I started on O2 all the time I was VERY short of breath with most any activity no matter how light.

Also something else is watching your carbohydrate intake. If you have blood sugar issues that could be causing inflammation which can also contribute to shortness of breath.

Where do you live by the way - what Transplant Center are you doctors talking of sending you too? Just curious - I just had a transplant this May is why I ask.

Take Care and I hope you are able to find something to work for you.
Lindsey

 

[coltsfan715]

To help you cough stuff up maybe try drinking more water. Also talk to your docs about hypertonic saline. Though I will say coming from someone who has been at a point with the low PFTs I would start with a low percent of the saline and try building up if you can. Maybe start at 3% and go to 5% and then to 7% or something. I started with 3% when I was at about 30% FEV1 and jumped to the 7% and ended up hurting my back from the coughing and had a VERY difficult time.

One thing that I found as my lungs got worse is that I had to double, triple and even quadruple the amount of time I spent doing CPT. I went from using my vest for 20-30 minutes to at times 2 hours straight to get ANY type of movement.

Also something else to consider with the low energy and shortness of breath is whether or not you should be using O2 more often - maybe all the time. I know when I started on O2 all the time I was VERY short of breath with most any activity no matter how light.

Also something else is watching your carbohydrate intake. If you have blood sugar issues that could be causing inflammation which can also contribute to shortness of breath.

Where do you live by the way - what Transplant Center are you doctors talking of sending you too? Just curious - I just had a transplant this May is why I ask.

Take Care and I hope you are able to find something to work for you.
Lindsey