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To those on kalydeco---Lauren (your thoughts, please)
- Thread starter dramamama
- Start date
S
semperfiohana
Guest
I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.
S
semperfiohana
Guest
I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.
C
cfsucks
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.</end quote>
how long have you been on it for now?
how long have you been on it for now?
C
cfsucks
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.</end quote>
how long have you been on it for now?
how long have you been on it for now?
S
semperfiohana
Guest
i have been on it since feb 17.
S
semperfiohana
Guest
i have been on it since feb 17.
My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe.
He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010
I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">
He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010
I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">
My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe.
He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010
I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">
He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010
I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">
musclemania70
New member
I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating.
For what its worth, we are all so appreciative.
For what its worth, we are all so appreciative.
musclemania70
New member
I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating.
For what its worth, we are all so appreciative.
For what its worth, we are all so appreciative.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating. For what its worth, we are all so appreciative.</end quote>
Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!
Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating. For what its worth, we are all so appreciative.</end quote>
Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!
Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!
M
MCGrad2006
Guest
I agree! Thank you so much for doing what you do! It really amazes me that you have all put your lives on hold to try out new things. I love reading about all of this! Thanks again!
M
MCGrad2006
Guest
I agree! Thank you so much for doing what you do! It really amazes me that you have all put your lives on hold to try out new things. I love reading about all of this! Thanks again!
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Lauren-
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Lauren-
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe. He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010 I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src=""></end quote>
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe. He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010 I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src=""></end quote>
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">