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So Many Questions

C

charliegirl

New member
I'm not really sure where to begin. I'm 35 years old and have had bronchial problems since I was a baby. I had a cough that never went away and one day a friend (we worked at an urgent care center together) told me to let him do a chest xray. After having the abnormal chest xray, I spent two years with a doctor that just kept giving me antiobiotics every time I turned around. So, I found a new doctor and he sent me for a sweat test....result was 73 on one arm and 71 on the other. He referred me to a CF specialist at Emory...where she told me I did have CF. We are doing the genetic testing (she said so that I could get the stuff that I needed to treat it) and went on and started me on Pulmozyme. Since starting the Pulmozyme, I have not had to sleep sitting up....so I'm liking that part. She wanted me to come back in a month to see if it has helped my PFT's and that we would talk about longivity and quality of life that next time I came back. She then booked a "double" time slot for me. In the mean time, I have been searching for info on CF. I even went as far as to rent the movie "Sick". Needless to say, I'm very scared of the unknown. When I told the doctors that I work for (Cardiologist) that I had been dx'ed with CF, their reply was "That's weird, at your age?" and "people with CF normally do not live to be that old." So, any advice to help calm my nerves until my "double" appointment on 9/4 would be very helpful. I know how sick I am of coughing ALL the time and the thought of it never going away is very upsetting. Sorry this is so long...just a little freaked out!!
 
C

charliegirl

New member
I'm not really sure where to begin. I'm 35 years old and have had bronchial problems since I was a baby. I had a cough that never went away and one day a friend (we worked at an urgent care center together) told me to let him do a chest xray. After having the abnormal chest xray, I spent two years with a doctor that just kept giving me antiobiotics every time I turned around. So, I found a new doctor and he sent me for a sweat test....result was 73 on one arm and 71 on the other. He referred me to a CF specialist at Emory...where she told me I did have CF. We are doing the genetic testing (she said so that I could get the stuff that I needed to treat it) and went on and started me on Pulmozyme. Since starting the Pulmozyme, I have not had to sleep sitting up....so I'm liking that part. She wanted me to come back in a month to see if it has helped my PFT's and that we would talk about longivity and quality of life that next time I came back. She then booked a "double" time slot for me. In the mean time, I have been searching for info on CF. I even went as far as to rent the movie "Sick". Needless to say, I'm very scared of the unknown. When I told the doctors that I work for (Cardiologist) that I had been dx'ed with CF, their reply was "That's weird, at your age?" and "people with CF normally do not live to be that old." So, any advice to help calm my nerves until my "double" appointment on 9/4 would be very helpful. I know how sick I am of coughing ALL the time and the thought of it never going away is very upsetting. Sorry this is so long...just a little freaked out!!
 
C

charliegirl

New member
I'm not really sure where to begin. I'm 35 years old and have had bronchial problems since I was a baby. I had a cough that never went away and one day a friend (we worked at an urgent care center together) told me to let him do a chest xray. After having the abnormal chest xray, I spent two years with a doctor that just kept giving me antiobiotics every time I turned around. So, I found a new doctor and he sent me for a sweat test....result was 73 on one arm and 71 on the other. He referred me to a CF specialist at Emory...where she told me I did have CF. We are doing the genetic testing (she said so that I could get the stuff that I needed to treat it) and went on and started me on Pulmozyme. Since starting the Pulmozyme, I have not had to sleep sitting up....so I'm liking that part. She wanted me to come back in a month to see if it has helped my PFT's and that we would talk about longivity and quality of life that next time I came back. She then booked a "double" time slot for me. In the mean time, I have been searching for info on CF. I even went as far as to rent the movie "Sick". Needless to say, I'm very scared of the unknown. When I told the doctors that I work for (Cardiologist) that I had been dx'ed with CF, their reply was "That's weird, at your age?" and "people with CF normally do not live to be that old." So, any advice to help calm my nerves until my "double" appointment on 9/4 would be very helpful. I know how sick I am of coughing ALL the time and the thought of it never going away is very upsetting. Sorry this is so long...just a little freaked out!!
 
C

charliegirl

New member
I'm not really sure where to begin. I'm 35 years old and have had bronchial problems since I was a baby. I had a cough that never went away and one day a friend (we worked at an urgent care center together) told me to let him do a chest xray. After having the abnormal chest xray, I spent two years with a doctor that just kept giving me antiobiotics every time I turned around. So, I found a new doctor and he sent me for a sweat test....result was 73 on one arm and 71 on the other. He referred me to a CF specialist at Emory...where she told me I did have CF. We are doing the genetic testing (she said so that I could get the stuff that I needed to treat it) and went on and started me on Pulmozyme. Since starting the Pulmozyme, I have not had to sleep sitting up....so I'm liking that part. She wanted me to come back in a month to see if it has helped my PFT's and that we would talk about longivity and quality of life that next time I came back. She then booked a "double" time slot for me. In the mean time, I have been searching for info on CF. I even went as far as to rent the movie "Sick". Needless to say, I'm very scared of the unknown. When I told the doctors that I work for (Cardiologist) that I had been dx'ed with CF, their reply was "That's weird, at your age?" and "people with CF normally do not live to be that old." So, any advice to help calm my nerves until my "double" appointment on 9/4 would be very helpful. I know how sick I am of coughing ALL the time and the thought of it never going away is very upsetting. Sorry this is so long...just a little freaked out!!
 
C

charliegirl

New member
I'm not really sure where to begin. I'm 35 years old and have had bronchial problems since I was a baby. I had a cough that never went away and one day a friend (we worked at an urgent care center together) told me to let him do a chest xray. After having the abnormal chest xray, I spent two years with a doctor that just kept giving me antiobiotics every time I turned around. So, I found a new doctor and he sent me for a sweat test....result was 73 on one arm and 71 on the other. He referred me to a CF specialist at Emory...where she told me I did have CF. We are doing the genetic testing (she said so that I could get the stuff that I needed to treat it) and went on and started me on Pulmozyme. Since starting the Pulmozyme, I have not had to sleep sitting up....so I'm liking that part. She wanted me to come back in a month to see if it has helped my PFT's and that we would talk about longivity and quality of life that next time I came back. She then booked a "double" time slot for me. In the mean time, I have been searching for info on CF. I even went as far as to rent the movie "Sick". Needless to say, I'm very scared of the unknown. When I told the doctors that I work for (Cardiologist) that I had been dx'ed with CF, their reply was "That's weird, at your age?" and "people with CF normally do not live to be that old." So, any advice to help calm my nerves until my "double" appointment on 9/4 would be very helpful. I know how sick I am of coughing ALL the time and the thought of it never going away is very upsetting. Sorry this is so long...just a little freaked out!!
 
M

Momtana

New member
hi, Charlie. Every person's story is unique yet we share similar experiences .... I was treated for allergies and asthma forever - finally diagnosed the month I turned 50! The coughing gets a lot "better" with appropriate treatment. Welcome to the cysterhood.
 
J

JennifersHope

New member
Oh my goodness.. I remember the day I was dx like it was today...... I was dx at 29 years old so a late one as well..I did and still do get a lot of the same responses as you.. I was also sick since a baby and put on a million antibiotic therapy's..

I have a great book for you, unused and unopened that my social worker gave me a while ago.. I already had a copy,, It is Now that I have CF.. or something like that.... It is for ppl who are adults that were dx..

It really is helpful.. No one can tell you the course your CF is going to take, each of us is so different.. I am 35 now.. I have had some really, really tough years...and right now my from a lung perspective my lungs are the best they have been in about five or six years...

Doing treatments is probably going to bring you a lot of relief... You will get a lot of information in the next few months from your CF team.. Make sure you are going to an accredited CF center..

Also make sure you get the vest prescription at your next clinic visit... Things will fall into place for you... I am sorry you are overwhelmed.. I was too and still am at times..

If you have any questions or anything specific feel free to ask, we have a lot of amazing ppl here, and also on CF2chat a lot of great ppl willing to help..

GOod luck,

Jennifer
 
M

Momtana

New member
hi, Charlie. Every person's story is unique yet we share similar experiences .... I was treated for allergies and asthma forever - finally diagnosed the month I turned 50! The coughing gets a lot "better" with appropriate treatment. Welcome to the cysterhood.
 
J

JennifersHope

New member
Oh my goodness.. I remember the day I was dx like it was today...... I was dx at 29 years old so a late one as well..I did and still do get a lot of the same responses as you.. I was also sick since a baby and put on a million antibiotic therapy's..

I have a great book for you, unused and unopened that my social worker gave me a while ago.. I already had a copy,, It is Now that I have CF.. or something like that.... It is for ppl who are adults that were dx..

It really is helpful.. No one can tell you the course your CF is going to take, each of us is so different.. I am 35 now.. I have had some really, really tough years...and right now my from a lung perspective my lungs are the best they have been in about five or six years...

Doing treatments is probably going to bring you a lot of relief... You will get a lot of information in the next few months from your CF team.. Make sure you are going to an accredited CF center..

Also make sure you get the vest prescription at your next clinic visit... Things will fall into place for you... I am sorry you are overwhelmed.. I was too and still am at times..

If you have any questions or anything specific feel free to ask, we have a lot of amazing ppl here, and also on CF2chat a lot of great ppl willing to help..

GOod luck,

Jennifer
 
M

Momtana

New member
hi, Charlie. Every person's story is unique yet we share similar experiences .... I was treated for allergies and asthma forever - finally diagnosed the month I turned 50! The coughing gets a lot "better" with appropriate treatment. Welcome to the cysterhood.
 
J

JennifersHope

New member
Oh my goodness.. I remember the day I was dx like it was today...... I was dx at 29 years old so a late one as well..I did and still do get a lot of the same responses as you.. I was also sick since a baby and put on a million antibiotic therapy's..

I have a great book for you, unused and unopened that my social worker gave me a while ago.. I already had a copy,, It is Now that I have CF.. or something like that.... It is for ppl who are adults that were dx..

It really is helpful.. No one can tell you the course your CF is going to take, each of us is so different.. I am 35 now.. I have had some really, really tough years...and right now my from a lung perspective my lungs are the best they have been in about five or six years...

Doing treatments is probably going to bring you a lot of relief... You will get a lot of information in the next few months from your CF team.. Make sure you are going to an accredited CF center..

Also make sure you get the vest prescription at your next clinic visit... Things will fall into place for you... I am sorry you are overwhelmed.. I was too and still am at times..

If you have any questions or anything specific feel free to ask, we have a lot of amazing ppl here, and also on CF2chat a lot of great ppl willing to help..

GOod luck,

Jennifer
 
M

Momtana

New member
hi, Charlie. Every person's story is unique yet we share similar experiences .... I was treated for allergies and asthma forever - finally diagnosed the month I turned 50! The coughing gets a lot "better" with appropriate treatment. Welcome to the cysterhood.
 
J

JennifersHope

New member
Oh my goodness.. I remember the day I was dx like it was today...... I was dx at 29 years old so a late one as well..I did and still do get a lot of the same responses as you.. I was also sick since a baby and put on a million antibiotic therapy's..

I have a great book for you, unused and unopened that my social worker gave me a while ago.. I already had a copy,, It is Now that I have CF.. or something like that.... It is for ppl who are adults that were dx..

It really is helpful.. No one can tell you the course your CF is going to take, each of us is so different.. I am 35 now.. I have had some really, really tough years...and right now my from a lung perspective my lungs are the best they have been in about five or six years...

Doing treatments is probably going to bring you a lot of relief... You will get a lot of information in the next few months from your CF team.. Make sure you are going to an accredited CF center..

Also make sure you get the vest prescription at your next clinic visit... Things will fall into place for you... I am sorry you are overwhelmed.. I was too and still am at times..

If you have any questions or anything specific feel free to ask, we have a lot of amazing ppl here, and also on CF2chat a lot of great ppl willing to help..

GOod luck,

Jennifer
 
M

Momtana

New member
hi, Charlie. Every person's story is unique yet we share similar experiences .... I was treated for allergies and asthma forever - finally diagnosed the month I turned 50! The coughing gets a lot "better" with appropriate treatment. Welcome to the cysterhood.
 
J

JennifersHope

New member
Oh my goodness.. I remember the day I was dx like it was today...... I was dx at 29 years old so a late one as well..I did and still do get a lot of the same responses as you.. I was also sick since a baby and put on a million antibiotic therapy's..
<br />
<br />I have a great book for you, unused and unopened that my social worker gave me a while ago.. I already had a copy,, It is Now that I have CF.. or something like that.... It is for ppl who are adults that were dx..
<br />
<br />It really is helpful.. No one can tell you the course your CF is going to take, each of us is so different.. I am 35 now.. I have had some really, really tough years...and right now my from a lung perspective my lungs are the best they have been in about five or six years...
<br />
<br />Doing treatments is probably going to bring you a lot of relief... You will get a lot of information in the next few months from your CF team.. Make sure you are going to an accredited CF center..
<br />
<br />Also make sure you get the vest prescription at your next clinic visit... Things will fall into place for you... I am sorry you are overwhelmed.. I was too and still am at times..
<br />
<br />If you have any questions or anything specific feel free to ask, we have a lot of amazing ppl here, and also on CF2chat a lot of great ppl willing to help..
<br />
<br />GOod luck,
<br />
<br />Jennifer
 
C

Chilemom

New member
hi charlie, my daughter has been dx almost a year ago, and even thou i would do anything to cure her cf, since she was dx she has been not good, she has been GREAT. Ok, she only has 21 month so you never know what happen in the future, but I guess your future will be better than your present because you will learn to live with it, you will learn to not live cf as a greek tragedy, it will be part of your life as your old cough.
What i am trying to tell you that is not what you live, is how you live things. Now the word quality has a different meaning.
When I am feeling down, i go to the CFF web page to the pipeline and I breath, and think to myself we are the main actors of this big process in the human history.
Ok, maybe for some people I am to positive, but ,,,, well maybe i am, and i am a happy person as well.
hope the best for you, and what i have learn so far the preventive medicine here is the clue to stay as healthy as possible.
 
C

Chilemom

New member
hi charlie, my daughter has been dx almost a year ago, and even thou i would do anything to cure her cf, since she was dx she has been not good, she has been GREAT. Ok, she only has 21 month so you never know what happen in the future, but I guess your future will be better than your present because you will learn to live with it, you will learn to not live cf as a greek tragedy, it will be part of your life as your old cough.
What i am trying to tell you that is not what you live, is how you live things. Now the word quality has a different meaning.
When I am feeling down, i go to the CFF web page to the pipeline and I breath, and think to myself we are the main actors of this big process in the human history.
Ok, maybe for some people I am to positive, but ,,,, well maybe i am, and i am a happy person as well.
hope the best for you, and what i have learn so far the preventive medicine here is the clue to stay as healthy as possible.
 
C

Chilemom

New member
hi charlie, my daughter has been dx almost a year ago, and even thou i would do anything to cure her cf, since she was dx she has been not good, she has been GREAT. Ok, she only has 21 month so you never know what happen in the future, but I guess your future will be better than your present because you will learn to live with it, you will learn to not live cf as a greek tragedy, it will be part of your life as your old cough.
What i am trying to tell you that is not what you live, is how you live things. Now the word quality has a different meaning.
When I am feeling down, i go to the CFF web page to the pipeline and I breath, and think to myself we are the main actors of this big process in the human history.
Ok, maybe for some people I am to positive, but ,,,, well maybe i am, and i am a happy person as well.
hope the best for you, and what i have learn so far the preventive medicine here is the clue to stay as healthy as possible.
 
C

Chilemom

New member
hi charlie, my daughter has been dx almost a year ago, and even thou i would do anything to cure her cf, since she was dx she has been not good, she has been GREAT. Ok, she only has 21 month so you never know what happen in the future, but I guess your future will be better than your present because you will learn to live with it, you will learn to not live cf as a greek tragedy, it will be part of your life as your old cough.
What i am trying to tell you that is not what you live, is how you live things. Now the word quality has a different meaning.
When I am feeling down, i go to the CFF web page to the pipeline and I breath, and think to myself we are the main actors of this big process in the human history.
Ok, maybe for some people I am to positive, but ,,,, well maybe i am, and i am a happy person as well.
hope the best for you, and what i have learn so far the preventive medicine here is the clue to stay as healthy as possible.
 
C

Chilemom

New member
hi charlie, my daughter has been dx almost a year ago, and even thou i would do anything to cure her cf, since she was dx she has been not good, she has been GREAT. Ok, she only has 21 month so you never know what happen in the future, but I guess your future will be better than your present because you will learn to live with it, you will learn to not live cf as a greek tragedy, it will be part of your life as your old cough.
<br />What i am trying to tell you that is not what you live, is how you live things. Now the word quality has a different meaning.
<br />When I am feeling down, i go to the CFF web page to the pipeline and I breath, and think to myself we are the main actors of this big process in the human history.
<br />Ok, maybe for some people I am to positive, but ,,,, well maybe i am, and i am a happy person as well.
<br />hope the best for you, and what i have learn so far the preventive medicine here is the clue to stay as healthy as possible.
<br />
 
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