What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

went in for drug study, tuneup instead

J

Jeana

New member
I went in to begin the Denufasol drug study, but did not qualify. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My FEV1 had dropped to 68 percent, even though I am feeling fine= no increased cough, no decrease in exercise tolerance. Anyway, my CF doc suggested that I get a tuneup to possibly qualify for the drug study later and just to catch it before it does become a problem. This will be the first time that I'm on IVs and not actually feeling really sick to begin with. So, I'm just curious about what percent of people get tuneups when they are not feeling sick.
 
J

Jeana

New member
I went in to begin the Denufasol drug study, but did not qualify. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My FEV1 had dropped to 68 percent, even though I am feeling fine= no increased cough, no decrease in exercise tolerance. Anyway, my CF doc suggested that I get a tuneup to possibly qualify for the drug study later and just to catch it before it does become a problem. This will be the first time that I'm on IVs and not actually feeling really sick to begin with. So, I'm just curious about what percent of people get tuneups when they are not feeling sick.
 
J

Jeana

New member
I went in to begin the Denufasol drug study, but did not qualify. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My FEV1 had dropped to 68 percent, even though I am feeling fine= no increased cough, no decrease in exercise tolerance. Anyway, my CF doc suggested that I get a tuneup to possibly qualify for the drug study later and just to catch it before it does become a problem. This will be the first time that I'm on IVs and not actually feeling really sick to begin with. So, I'm just curious about what percent of people get tuneups when they are not feeling sick.
 
J

Jeana

New member
I went in to begin the Denufasol drug study, but did not qualify. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My FEV1 had dropped to 68 percent, even though I am feeling fine= no increased cough, no decrease in exercise tolerance. Anyway, my CF doc suggested that I get a tuneup to possibly qualify for the drug study later and just to catch it before it does become a problem. This will be the first time that I'm on IVs and not actually feeling really sick to begin with. So, I'm just curious about what percent of people get tuneups when they are not feeling sick.
 
J

Jeana

New member
I went in to begin the Denufasol drug study, but did not qualify. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My FEV1 had dropped to 68 percent, even though I am feeling fine= no increased cough, no decrease in exercise tolerance. Anyway, my CF doc suggested that I get a tuneup to possibly qualify for the drug study later and just to catch it before it does become a problem. This will be the first time that I'm on IVs and not actually feeling really sick to begin with. So, I'm just curious about what percent of people get tuneups when they are not feeling sick.
 
M

MaksNana

New member
Gosh Jeana,,,,
that's a tough one.........I know it would be hard for you to go in with you having some little ones at home...But if I were you I would go in and get those functions up,,,especially after learning about Ronnie's story....

And I know a few kids that seemed perfectly healthy and thier lung functions had gone down and they go in for a tune up and come out great ,,,,,,which this has been the norm for Makailyn also....

I'm to glad your not feeling bad,,,and keep us posted on what you decide....

Many blessings to you and your family,,,,Karla <img src="i/expressions/heart.gif" border="0">
 
M

MaksNana

New member
Gosh Jeana,,,,
that's a tough one.........I know it would be hard for you to go in with you having some little ones at home...But if I were you I would go in and get those functions up,,,especially after learning about Ronnie's story....

And I know a few kids that seemed perfectly healthy and thier lung functions had gone down and they go in for a tune up and come out great ,,,,,,which this has been the norm for Makailyn also....

I'm to glad your not feeling bad,,,and keep us posted on what you decide....

Many blessings to you and your family,,,,Karla <img src="i/expressions/heart.gif" border="0">
 
M

MaksNana

New member
Gosh Jeana,,,,
that's a tough one.........I know it would be hard for you to go in with you having some little ones at home...But if I were you I would go in and get those functions up,,,especially after learning about Ronnie's story....

And I know a few kids that seemed perfectly healthy and thier lung functions had gone down and they go in for a tune up and come out great ,,,,,,which this has been the norm for Makailyn also....

I'm to glad your not feeling bad,,,and keep us posted on what you decide....

Many blessings to you and your family,,,,Karla <img src="i/expressions/heart.gif" border="0">
 
M

MaksNana

New member
Gosh Jeana,,,,
that's a tough one.........I know it would be hard for you to go in with you having some little ones at home...But if I were you I would go in and get those functions up,,,especially after learning about Ronnie's story....

And I know a few kids that seemed perfectly healthy and thier lung functions had gone down and they go in for a tune up and come out great ,,,,,,which this has been the norm for Makailyn also....

I'm to glad your not feeling bad,,,and keep us posted on what you decide....

Many blessings to you and your family,,,,Karla <img src="i/expressions/heart.gif" border="0">
 
M

MaksNana

New member
Gosh Jeana,,,,
<br />that's a tough one.........I know it would be hard for you to go in with you having some little ones at home...But if I were you I would go in and get those functions up,,,especially after learning about Ronnie's story....
<br />
<br />And I know a few kids that seemed perfectly healthy and thier lung functions had gone down and they go in for a tune up and come out great ,,,,,,which this has been the norm for Makailyn also....
<br />
<br />I'm to glad your not feeling bad,,,and keep us posted on what you decide....
<br />
<br />Many blessings to you and your family,,,,Karla <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
My doctor will not put me in unless I am sick or my PFT's go WAYYYYY down. In the spring my PFT's were down 10% between a three month appt gap and he didnt even put me in. I was a little concerned about that, but I was feeling well and was keeping up with my work schedule. Since then, at my next appt (three month follow-up) which happened about a month and a half ago and my PFT's were stable (up 2%, so not back to my norm, but up from the previous time).

I have since been sick a few times and only been on oral meds. Right now, looking back, since the middle of June I have had one week of NOT being on oral abx! I am about to finish the second round (of something different of course). So I guess what I am trying to say is my doctor likes to exhaust all options before the IV tune-up. If I end up sick again once this round of orals is done, I will probably be in for a tune-up. Hopefully this combo will do the trick though.

I hope you are in there quick and home with your babies as soon as possible!
 
M

MCGrad2006

Guest
My doctor will not put me in unless I am sick or my PFT's go WAYYYYY down. In the spring my PFT's were down 10% between a three month appt gap and he didnt even put me in. I was a little concerned about that, but I was feeling well and was keeping up with my work schedule. Since then, at my next appt (three month follow-up) which happened about a month and a half ago and my PFT's were stable (up 2%, so not back to my norm, but up from the previous time).

I have since been sick a few times and only been on oral meds. Right now, looking back, since the middle of June I have had one week of NOT being on oral abx! I am about to finish the second round (of something different of course). So I guess what I am trying to say is my doctor likes to exhaust all options before the IV tune-up. If I end up sick again once this round of orals is done, I will probably be in for a tune-up. Hopefully this combo will do the trick though.

I hope you are in there quick and home with your babies as soon as possible!
 
M

MCGrad2006

Guest
My doctor will not put me in unless I am sick or my PFT's go WAYYYYY down. In the spring my PFT's were down 10% between a three month appt gap and he didnt even put me in. I was a little concerned about that, but I was feeling well and was keeping up with my work schedule. Since then, at my next appt (three month follow-up) which happened about a month and a half ago and my PFT's were stable (up 2%, so not back to my norm, but up from the previous time).

I have since been sick a few times and only been on oral meds. Right now, looking back, since the middle of June I have had one week of NOT being on oral abx! I am about to finish the second round (of something different of course). So I guess what I am trying to say is my doctor likes to exhaust all options before the IV tune-up. If I end up sick again once this round of orals is done, I will probably be in for a tune-up. Hopefully this combo will do the trick though.

I hope you are in there quick and home with your babies as soon as possible!
 
M

MCGrad2006

Guest
My doctor will not put me in unless I am sick or my PFT's go WAYYYYY down. In the spring my PFT's were down 10% between a three month appt gap and he didnt even put me in. I was a little concerned about that, but I was feeling well and was keeping up with my work schedule. Since then, at my next appt (three month follow-up) which happened about a month and a half ago and my PFT's were stable (up 2%, so not back to my norm, but up from the previous time).

I have since been sick a few times and only been on oral meds. Right now, looking back, since the middle of June I have had one week of NOT being on oral abx! I am about to finish the second round (of something different of course). So I guess what I am trying to say is my doctor likes to exhaust all options before the IV tune-up. If I end up sick again once this round of orals is done, I will probably be in for a tune-up. Hopefully this combo will do the trick though.

I hope you are in there quick and home with your babies as soon as possible!
 
M

MCGrad2006

Guest
My doctor will not put me in unless I am sick or my PFT's go WAYYYYY down. In the spring my PFT's were down 10% between a three month appt gap and he didnt even put me in. I was a little concerned about that, but I was feeling well and was keeping up with my work schedule. Since then, at my next appt (three month follow-up) which happened about a month and a half ago and my PFT's were stable (up 2%, so not back to my norm, but up from the previous time).
<br />
<br />I have since been sick a few times and only been on oral meds. Right now, looking back, since the middle of June I have had one week of NOT being on oral abx! I am about to finish the second round (of something different of course). So I guess what I am trying to say is my doctor likes to exhaust all options before the IV tune-up. If I end up sick again once this round of orals is done, I will probably be in for a tune-up. Hopefully this combo will do the trick though.
<br />
<br />I hope you are in there quick and home with your babies as soon as possible!
 
You must log in or register to reply here.
Top