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

CountryGirl · Sep 17, 2007

I agree with Colstfan, you should definitely ask your docs about hypertonic saline, it is rough at first but it definitely makes you cough up a bunch of junk. I also think you maybe should try saline nasal rinses...my doctors always say you need to keep the ceiling clear to help with the floor. Sinus' tend to play a major part in CF.

Also I think that you should definitely see a transplant team about being listed. The great thing about it is that if lungs come for you and you feel youre not ready you can always pass on them. Its always better to be listed sooner wrather than later. I'm sure youve heard this before but incase you havent.

CountryGirl · Sep 17, 2007

I agree with Colstfan, you should definitely ask your docs about hypertonic saline, it is rough at first but it definitely makes you cough up a bunch of junk. I also think you maybe should try saline nasal rinses...my doctors always say you need to keep the ceiling clear to help with the floor. Sinus' tend to play a major part in CF.

Also I think that you should definitely see a transplant team about being listed. The great thing about it is that if lungs come for you and you feel youre not ready you can always pass on them. Its always better to be listed sooner wrather than later. I'm sure youve heard this before but incase you havent.

CountryGirl · Sep 17, 2007

I agree with Colstfan, you should definitely ask your docs about hypertonic saline, it is rough at first but it definitely makes you cough up a bunch of junk. I also think you maybe should try saline nasal rinses...my doctors always say you need to keep the ceiling clear to help with the floor. Sinus' tend to play a major part in CF.

Also I think that you should definitely see a transplant team about being listed. The great thing about it is that if lungs come for you and you feel youre not ready you can always pass on them. Its always better to be listed sooner wrather than later. I'm sure youve heard this before but incase you havent.

CountryGirl · Sep 17, 2007

I agree with Colstfan, you should definitely ask your docs about hypertonic saline, it is rough at first but it definitely makes you cough up a bunch of junk. I also think you maybe should try saline nasal rinses...my doctors always say you need to keep the ceiling clear to help with the floor. Sinus' tend to play a major part in CF.

Also I think that you should definitely see a transplant team about being listed. The great thing about it is that if lungs come for you and you feel youre not ready you can always pass on them. Its always better to be listed sooner wrather than later. I'm sure youve heard this before but incase you havent.

CountryGirl · Sep 17, 2007

I agree with Colstfan, you should definitely ask your docs about hypertonic saline, it is rough at first but it definitely makes you cough up a bunch of junk. I also think you maybe should try saline nasal rinses...my doctors always say you need to keep the ceiling clear to help with the floor. Sinus' tend to play a major part in CF.

Also I think that you should definitely see a transplant team about being listed. The great thing about it is that if lungs come for you and you feel youre not ready you can always pass on them. Its always better to be listed sooner wrather than later. I'm sure youve heard this before but incase you havent.

coltsfan715 · Sep 18, 2007

Just wanted to say Yes you can pass on them if you are not ready to be transplanted BUT if you are not ready mentally to be transplanted then you should ask them to list you inactively first. I say that because if you go through everything and they list you actively then you are sick enough to need it. There is a time frame in which they PREFER to transplant patients because the prognosis is better for the outcome post transplant. I am not saying they will NOT transplant you after a certain point just that they prefer to transplant within a certain range.

Back to my original point - if your are called for lungs and you turn them down you have to go through a huge ordeal at some centers to be out back on the list. You have to explain why you turned down the offer and then explain why you think they should list you again and why the next time will be different and why you will not continue to turn down the call if you are called again.

Just putting that out there because I was made aware of that at my center by some other transplant patients - several of whom turned down their first call because they were not ready mentally for it and did not think they needed it at the time or whatever. Our center does that to make sure that you are mentally ready to make the commitment to transplant - after you turn down the first offer.

Sorry didn't mean to get off topic - but again I have been thinking alot about this post and I really think that you may need to get your saturation checked throughout the day and at the times that you feel sluggish if you are not already using O2 full time. Lack of O2 can explain alot of things.

Take Care,
Lindsey

coltsfan715 · Sep 18, 2007

Just wanted to say Yes you can pass on them if you are not ready to be transplanted BUT if you are not ready mentally to be transplanted then you should ask them to list you inactively first. I say that because if you go through everything and they list you actively then you are sick enough to need it. There is a time frame in which they PREFER to transplant patients because the prognosis is better for the outcome post transplant. I am not saying they will NOT transplant you after a certain point just that they prefer to transplant within a certain range.

Back to my original point - if your are called for lungs and you turn them down you have to go through a huge ordeal at some centers to be out back on the list. You have to explain why you turned down the offer and then explain why you think they should list you again and why the next time will be different and why you will not continue to turn down the call if you are called again.

Just putting that out there because I was made aware of that at my center by some other transplant patients - several of whom turned down their first call because they were not ready mentally for it and did not think they needed it at the time or whatever. Our center does that to make sure that you are mentally ready to make the commitment to transplant - after you turn down the first offer.

Sorry didn't mean to get off topic - but again I have been thinking alot about this post and I really think that you may need to get your saturation checked throughout the day and at the times that you feel sluggish if you are not already using O2 full time. Lack of O2 can explain alot of things.

Take Care,
Lindsey

coltsfan715 · Sep 18, 2007

Just wanted to say Yes you can pass on them if you are not ready to be transplanted BUT if you are not ready mentally to be transplanted then you should ask them to list you inactively first. I say that because if you go through everything and they list you actively then you are sick enough to need it. There is a time frame in which they PREFER to transplant patients because the prognosis is better for the outcome post transplant. I am not saying they will NOT transplant you after a certain point just that they prefer to transplant within a certain range.

Back to my original point - if your are called for lungs and you turn them down you have to go through a huge ordeal at some centers to be out back on the list. You have to explain why you turned down the offer and then explain why you think they should list you again and why the next time will be different and why you will not continue to turn down the call if you are called again.

Just putting that out there because I was made aware of that at my center by some other transplant patients - several of whom turned down their first call because they were not ready mentally for it and did not think they needed it at the time or whatever. Our center does that to make sure that you are mentally ready to make the commitment to transplant - after you turn down the first offer.

Sorry didn't mean to get off topic - but again I have been thinking alot about this post and I really think that you may need to get your saturation checked throughout the day and at the times that you feel sluggish if you are not already using O2 full time. Lack of O2 can explain alot of things.

Take Care,
Lindsey

coltsfan715 · Sep 18, 2007

Just wanted to say Yes you can pass on them if you are not ready to be transplanted BUT if you are not ready mentally to be transplanted then you should ask them to list you inactively first. I say that because if you go through everything and they list you actively then you are sick enough to need it. There is a time frame in which they PREFER to transplant patients because the prognosis is better for the outcome post transplant. I am not saying they will NOT transplant you after a certain point just that they prefer to transplant within a certain range.

Back to my original point - if your are called for lungs and you turn them down you have to go through a huge ordeal at some centers to be out back on the list. You have to explain why you turned down the offer and then explain why you think they should list you again and why the next time will be different and why you will not continue to turn down the call if you are called again.

Just putting that out there because I was made aware of that at my center by some other transplant patients - several of whom turned down their first call because they were not ready mentally for it and did not think they needed it at the time or whatever. Our center does that to make sure that you are mentally ready to make the commitment to transplant - after you turn down the first offer.

Sorry didn't mean to get off topic - but again I have been thinking alot about this post and I really think that you may need to get your saturation checked throughout the day and at the times that you feel sluggish if you are not already using O2 full time. Lack of O2 can explain alot of things.

Take Care,
Lindsey

coltsfan715 · Sep 18, 2007

Just wanted to say Yes you can pass on them if you are not ready to be transplanted BUT if you are not ready mentally to be transplanted then you should ask them to list you inactively first. I say that because if you go through everything and they list you actively then you are sick enough to need it. There is a time frame in which they PREFER to transplant patients because the prognosis is better for the outcome post transplant. I am not saying they will NOT transplant you after a certain point just that they prefer to transplant within a certain range.

Back to my original point - if your are called for lungs and you turn them down you have to go through a huge ordeal at some centers to be out back on the list. You have to explain why you turned down the offer and then explain why you think they should list you again and why the next time will be different and why you will not continue to turn down the call if you are called again.

Just putting that out there because I was made aware of that at my center by some other transplant patients - several of whom turned down their first call because they were not ready mentally for it and did not think they needed it at the time or whatever. Our center does that to make sure that you are mentally ready to make the commitment to transplant - after you turn down the first offer.

Sorry didn't mean to get off topic - but again I have been thinking alot about this post and I really think that you may need to get your saturation checked throughout the day and at the times that you feel sluggish if you are not already using O2 full time. Lack of O2 can explain alot of things.

Take Care,
Lindsey

KaiserWilly · Sep 19, 2007

Thanks everybody,
That gives me something to work with. I have actually made my hypertonic saline by using the device that measures salinity in saltwater aquariums. I start off with 9% and cut it with distilled water until I get it between 5 and 7 %. It does help and I have not done that in a while. Maybe my method can save some of you some money if you want to try it. I will start using the saline again.

The transplant team I would be working with is at Univ. of AL in Birmingham Alabama. AKA Kirkland clinic. They seem like really nice people and they appear very knowledgable. It seems that there truly are a few of us still around and according to the people at Emory, they have some patients in their sixties. I would be willing to do that.

Today I have had a better day and part of that may be being outside more and using less albuterol sulphate. Also my car is broken down and I borrowed my neighbor's truck with no air conditioning, I did cough more and deeper. When I get hot I cough a lot and since I have three permanently broken ribs it is a little painful.

If I could get just a little better than what I was today I could function moderately well from now on. I worked in my garage this afternoon replacing the timing chains on my Altima. I have always done my own work and that keeps me healthier than I would be otherwise. I do get cut up a lot though but that is part of doing mechanical things.

Well I need to get to bed because I have appointments tommorow. Incidentally I live right on the Georgia/Alabama border off of I-20 in Heflin Alabama. Thanks for the feedback it really helps.

Slainte, (Gaelic for to your health)
Kaiser Willy

KaiserWilly · Sep 19, 2007

Thanks everybody,
That gives me something to work with. I have actually made my hypertonic saline by using the device that measures salinity in saltwater aquariums. I start off with 9% and cut it with distilled water until I get it between 5 and 7 %. It does help and I have not done that in a while. Maybe my method can save some of you some money if you want to try it. I will start using the saline again.

The transplant team I would be working with is at Univ. of AL in Birmingham Alabama. AKA Kirkland clinic. They seem like really nice people and they appear very knowledgable. It seems that there truly are a few of us still around and according to the people at Emory, they have some patients in their sixties. I would be willing to do that.

Today I have had a better day and part of that may be being outside more and using less albuterol sulphate. Also my car is broken down and I borrowed my neighbor's truck with no air conditioning, I did cough more and deeper. When I get hot I cough a lot and since I have three permanently broken ribs it is a little painful.

If I could get just a little better than what I was today I could function moderately well from now on. I worked in my garage this afternoon replacing the timing chains on my Altima. I have always done my own work and that keeps me healthier than I would be otherwise. I do get cut up a lot though but that is part of doing mechanical things.

Well I need to get to bed because I have appointments tommorow. Incidentally I live right on the Georgia/Alabama border off of I-20 in Heflin Alabama. Thanks for the feedback it really helps.

Slainte, (Gaelic for to your health)
Kaiser Willy

KaiserWilly · Sep 19, 2007

Thanks everybody,
That gives me something to work with. I have actually made my hypertonic saline by using the device that measures salinity in saltwater aquariums. I start off with 9% and cut it with distilled water until I get it between 5 and 7 %. It does help and I have not done that in a while. Maybe my method can save some of you some money if you want to try it. I will start using the saline again.

The transplant team I would be working with is at Univ. of AL in Birmingham Alabama. AKA Kirkland clinic. They seem like really nice people and they appear very knowledgable. It seems that there truly are a few of us still around and according to the people at Emory, they have some patients in their sixties. I would be willing to do that.

Today I have had a better day and part of that may be being outside more and using less albuterol sulphate. Also my car is broken down and I borrowed my neighbor's truck with no air conditioning, I did cough more and deeper. When I get hot I cough a lot and since I have three permanently broken ribs it is a little painful.

If I could get just a little better than what I was today I could function moderately well from now on. I worked in my garage this afternoon replacing the timing chains on my Altima. I have always done my own work and that keeps me healthier than I would be otherwise. I do get cut up a lot though but that is part of doing mechanical things.

Well I need to get to bed because I have appointments tommorow. Incidentally I live right on the Georgia/Alabama border off of I-20 in Heflin Alabama. Thanks for the feedback it really helps.

Slainte, (Gaelic for to your health)
Kaiser Willy

KaiserWilly · Sep 19, 2007

Thanks everybody,
That gives me something to work with. I have actually made my hypertonic saline by using the device that measures salinity in saltwater aquariums. I start off with 9% and cut it with distilled water until I get it between 5 and 7 %. It does help and I have not done that in a while. Maybe my method can save some of you some money if you want to try it. I will start using the saline again.

The transplant team I would be working with is at Univ. of AL in Birmingham Alabama. AKA Kirkland clinic. They seem like really nice people and they appear very knowledgable. It seems that there truly are a few of us still around and according to the people at Emory, they have some patients in their sixties. I would be willing to do that.

Today I have had a better day and part of that may be being outside more and using less albuterol sulphate. Also my car is broken down and I borrowed my neighbor's truck with no air conditioning, I did cough more and deeper. When I get hot I cough a lot and since I have three permanently broken ribs it is a little painful.

If I could get just a little better than what I was today I could function moderately well from now on. I worked in my garage this afternoon replacing the timing chains on my Altima. I have always done my own work and that keeps me healthier than I would be otherwise. I do get cut up a lot though but that is part of doing mechanical things.

Well I need to get to bed because I have appointments tommorow. Incidentally I live right on the Georgia/Alabama border off of I-20 in Heflin Alabama. Thanks for the feedback it really helps.

Slainte, (Gaelic for to your health)
Kaiser Willy

KaiserWilly · Sep 19, 2007

Thanks everybody,
That gives me something to work with. I have actually made my hypertonic saline by using the device that measures salinity in saltwater aquariums. I start off with 9% and cut it with distilled water until I get it between 5 and 7 %. It does help and I have not done that in a while. Maybe my method can save some of you some money if you want to try it. I will start using the saline again.

The transplant team I would be working with is at Univ. of AL in Birmingham Alabama. AKA Kirkland clinic. They seem like really nice people and they appear very knowledgable. It seems that there truly are a few of us still around and according to the people at Emory, they have some patients in their sixties. I would be willing to do that.

Today I have had a better day and part of that may be being outside more and using less albuterol sulphate. Also my car is broken down and I borrowed my neighbor's truck with no air conditioning, I did cough more and deeper. When I get hot I cough a lot and since I have three permanently broken ribs it is a little painful.

If I could get just a little better than what I was today I could function moderately well from now on. I worked in my garage this afternoon replacing the timing chains on my Altima. I have always done my own work and that keeps me healthier than I would be otherwise. I do get cut up a lot though but that is part of doing mechanical things.

Well I need to get to bed because I have appointments tommorow. Incidentally I live right on the Georgia/Alabama border off of I-20 in Heflin Alabama. Thanks for the feedback it really helps.

Slainte, (Gaelic for to your health)
Kaiser Willy

AnD · Sep 20, 2007