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The future witha VX drug
- Thread starter Cerulean
- Start date
My hopes (okay, I know it might not happen)...but we're talking about hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">...is that my S (13) will have normal lung function and a normal life, he will no longer require nebs for pa or catch stuff in his lungs like MRSA...because his lung mucous will be acting normally (or almost). He will still need enzymes etc.
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hopes (okay, I know it might not happen)...but we're talking about hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">...is that my S (13) will have normal lung function and a normal life, he will no longer require nebs for pa or catch stuff in his lungs like MRSA...because his lung mucous will be acting normally (or almost). He will still need enzymes etc.
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hopes (okay, I know it might not happen)...but we're talking about hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">...is that my S (13) will have normal lung function and a normal life, he will no longer require nebs for pa or catch stuff in his lungs like MRSA...because his lung mucous will be acting normally (or almost). He will still need enzymes etc.
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hopes (okay, I know it might not happen)...but we're talking about hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">...is that my S (13) will have normal lung function and a normal life, he will no longer require nebs for pa or catch stuff in his lungs like MRSA...because his lung mucous will be acting normally (or almost). He will still need enzymes etc.
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hope for the two older kids:
That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
My hopes (okay, I know it might not happen)...but we're talking about hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">...is that my S (13) will have normal lung function and a normal life, he will no longer require nebs for pa or catch stuff in his lungs like MRSA...because his lung mucous will be acting normally (or almost). He will still need enzymes etc.
<br />
<br />My hope for the two older kids:
<br />
<br />That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
<br />
<br />I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
<br />
<br />I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
<br />
<br />My hope for the two older kids:
<br />
<br />That they keep the fev that they have or improve it. That they no longer have lung infections and dont cough all the time, that they can look forward to a normal future without a cloud over their lives...no need for physio, nebs and all that stuff!
<br />
<br />I'm going off the results so far, my hopes are high...but not based on unreality, I've read the research so far and heard from actual participants from the ph2, I understand what the drug does...I also hope that all cfers everywhere get to benefit from the vx drugs, not just those with g551d etc.
<br />
<br />I believe that if the ph3 are successful, vx drugs targeting the other mutations are just a whisper away...wow, is it really possible after all these years?
mamaScarlett
Active member
my opinion is that this drug is the real deal-and its taken me a long time to say that. im' cautious and jaded. but not with this one.
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
mamaScarlett
Active member
my opinion is that this drug is the real deal-and its taken me a long time to say that. im' cautious and jaded. but not with this one.
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
mamaScarlett
Active member
my opinion is that this drug is the real deal-and its taken me a long time to say that. im' cautious and jaded. but not with this one.
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
mamaScarlett
Active member
my opinion is that this drug is the real deal-and its taken me a long time to say that. im' cautious and jaded. but not with this one.
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
3. That with the extra time I have each day, I can paint more and play with my kids more!
...did I mention no more chest pt??? heheheh
mamaScarlett
Active member
my opinion is that this drug is the real deal-and its taken me a long time to say that. im' cautious and jaded. but not with this one.
<br />my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
<br />my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
<br />2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
<br />3. That with the extra time I have each day, I can paint more and play with my kids more!
<br />
<br />...did I mention no more chest pt??? heheheh
<br />my opinion is that this/these drugs will not reverse lung damage or neccesariy "improve" lung function. but they will keep us from getting further damage.
<br />my 3 greatest hopes are: 1. I am here to dance at my daughters wedding, and coach the birth of her children. (teary eyed) i truly believe-know-this will be the case.
<br />2. (this is a hope/wish) That I will not have to sit on this stinkin machine 2-3 hours a day. Also, that I won't have to deal with yearly hospital trips that totally interupt me and my familys life.
<br />3. That with the extra time I have each day, I can paint more and play with my kids more!
<br />
<br />...did I mention no more chest pt??? heheheh
ugh, I hope and pray that these drugs work. I do not have the mutations that they help. There is a drug called Ataluren they say will help the X mutations. I never thought I would live to be this old. I read in a medical journal that I would live to be 16 (when I was 14-when I was diagnosed). I want to get married...have a child. My doc says there is no magic pill but even if I can just have my lung function and this mucus stop, well that would be a blessing straight from god.
ugh, I hope and pray that these drugs work. I do not have the mutations that they help. There is a drug called Ataluren they say will help the X mutations. I never thought I would live to be this old. I read in a medical journal that I would live to be 16 (when I was 14-when I was diagnosed). I want to get married...have a child. My doc says there is no magic pill but even if I can just have my lung function and this mucus stop, well that would be a blessing straight from god.
ugh, I hope and pray that these drugs work. I do not have the mutations that they help. There is a drug called Ataluren they say will help the X mutations. I never thought I would live to be this old. I read in a medical journal that I would live to be 16 (when I was 14-when I was diagnosed). I want to get married...have a child. My doc says there is no magic pill but even if I can just have my lung function and this mucus stop, well that would be a blessing straight from god.
ugh, I hope and pray that these drugs work. I do not have the mutations that they help. There is a drug called Ataluren they say will help the X mutations. I never thought I would live to be this old. I read in a medical journal that I would live to be 16 (when I was 14-when I was diagnosed). I want to get married...have a child. My doc says there is no magic pill but even if I can just have my lung function and this mucus stop, well that would be a blessing straight from god.
ugh, I hope and pray that these drugs work. I do not have the mutations that they help. There is a drug called Ataluren they say will help the X mutations. I never thought I would live to be this old. I read in a medical journal that I would live to be 16 (when I was 14-when I was diagnosed). I want to get married...have a child. My doc says there is no magic pill but even if I can just have my lung function and this mucus stop, well that would be a blessing straight from god.