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!

So Many Questions

D

Diane

New member
Welcome Charliegirl :) I was diagnosed at age 3 so i knew all my life that i had cf, but i didnt start having real symptoms till i was well into my 20's. To be honest i didnt know a whole lot about cf till i started having lung problems and started reading and learning everything i could about cf. I would say i learned a LOT in the past 6 years or so from being on this site.
This is the way i would look at your situation.... you have been sick a lot all of your life, you probably had some worries about your longevity because of being sick a lot, and not knowing what the heck was always causing it.
Then you find out you have cf.
Nothings changed, except for the fact that now you finally know what the heck is going on, and can be treated for it. You've had cf all your life, the only that has truely changed is that now you know it.
Once you get on a good regimen, and start to get used to the idea that you have cf , it may not seem so overwhelming. We are all here for you when you need us.:)
 
D

Diane

New member
Welcome Charliegirl :) I was diagnosed at age 3 so i knew all my life that i had cf, but i didnt start having real symptoms till i was well into my 20's. To be honest i didnt know a whole lot about cf till i started having lung problems and started reading and learning everything i could about cf. I would say i learned a LOT in the past 6 years or so from being on this site.
This is the way i would look at your situation.... you have been sick a lot all of your life, you probably had some worries about your longevity because of being sick a lot, and not knowing what the heck was always causing it.
Then you find out you have cf.
Nothings changed, except for the fact that now you finally know what the heck is going on, and can be treated for it. You've had cf all your life, the only that has truely changed is that now you know it.
Once you get on a good regimen, and start to get used to the idea that you have cf , it may not seem so overwhelming. We are all here for you when you need us.:)
 
D

Diane

New member
Welcome Charliegirl :) I was diagnosed at age 3 so i knew all my life that i had cf, but i didnt start having real symptoms till i was well into my 20's. To be honest i didnt know a whole lot about cf till i started having lung problems and started reading and learning everything i could about cf. I would say i learned a LOT in the past 6 years or so from being on this site.
This is the way i would look at your situation.... you have been sick a lot all of your life, you probably had some worries about your longevity because of being sick a lot, and not knowing what the heck was always causing it.
Then you find out you have cf.
Nothings changed, except for the fact that now you finally know what the heck is going on, and can be treated for it. You've had cf all your life, the only that has truely changed is that now you know it.
Once you get on a good regimen, and start to get used to the idea that you have cf , it may not seem so overwhelming. We are all here for you when you need us.:)
 
D

Diane

New member
Welcome Charliegirl :) I was diagnosed at age 3 so i knew all my life that i had cf, but i didnt start having real symptoms till i was well into my 20's. To be honest i didnt know a whole lot about cf till i started having lung problems and started reading and learning everything i could about cf. I would say i learned a LOT in the past 6 years or so from being on this site.
This is the way i would look at your situation.... you have been sick a lot all of your life, you probably had some worries about your longevity because of being sick a lot, and not knowing what the heck was always causing it.
Then you find out you have cf.
Nothings changed, except for the fact that now you finally know what the heck is going on, and can be treated for it. You've had cf all your life, the only that has truely changed is that now you know it.
Once you get on a good regimen, and start to get used to the idea that you have cf , it may not seem so overwhelming. We are all here for you when you need us.:)
 
D

Diane

New member
Welcome Charliegirl :) I was diagnosed at age 3 so i knew all my life that i had cf, but i didnt start having real symptoms till i was well into my 20's. To be honest i didnt know a whole lot about cf till i started having lung problems and started reading and learning everything i could about cf. I would say i learned a LOT in the past 6 years or so from being on this site.
<br /> This is the way i would look at your situation.... you have been sick a lot all of your life, you probably had some worries about your longevity because of being sick a lot, and not knowing what the heck was always causing it.
<br />Then you find out you have cf.
<br />Nothings changed, except for the fact that now you finally know what the heck is going on, and can be treated for it. You've had cf all your life, the only that has truely changed is that now you know it.
<br /> Once you get on a good regimen, and start to get used to the idea that you have cf , it may not seem so overwhelming. We are all here for you when you need us.:)
<br />
<br />
 
J

Juliet

New member
Hi Charlie, Welcome to CF.com. Sorry about your DX.

I can totally relate to what you're going through. My story about my DX at 43 (several months ago) can be found here: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=33171">http://forums.cysticfibrosis.c...catid=5&threadid=33171</a> It's a journey to accept CF and go through the educational process.

There is lots of great information online at CFF.org. You might want to call the Cystic Fibrosis Foundation They sent me some really good DVDs and books with information about CF. I've replayed the DVDs several times and shown them to my family members and friends.

As others and you have mentioned getting into the right regimen makes a world of difference! Pulmozyme really helped me too. A month after starting Pulmozyme my docs put me on Hypertonic Saline. It's an inhaled salt water solution. Makes you feel like you were surfing and wiped out breathing in a wave! Been there, done that! :) It is great for clearing out your lungs. Mine have been feeling better the past few months than they have for literally years!

Take care, ~Juliet
 
J

Juliet

New member
Hi Charlie, Welcome to CF.com. Sorry about your DX.

I can totally relate to what you're going through. My story about my DX at 43 (several months ago) can be found here: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=33171">http://forums.cysticfibrosis.c...catid=5&threadid=33171</a> It's a journey to accept CF and go through the educational process.

There is lots of great information online at CFF.org. You might want to call the Cystic Fibrosis Foundation They sent me some really good DVDs and books with information about CF. I've replayed the DVDs several times and shown them to my family members and friends.

As others and you have mentioned getting into the right regimen makes a world of difference! Pulmozyme really helped me too. A month after starting Pulmozyme my docs put me on Hypertonic Saline. It's an inhaled salt water solution. Makes you feel like you were surfing and wiped out breathing in a wave! Been there, done that! :) It is great for clearing out your lungs. Mine have been feeling better the past few months than they have for literally years!

Take care, ~Juliet
 
J

Juliet

New member
Hi Charlie, Welcome to CF.com. Sorry about your DX.

I can totally relate to what you're going through. My story about my DX at 43 (several months ago) can be found here: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=33171">http://forums.cysticfibrosis.c...catid=5&threadid=33171</a> It's a journey to accept CF and go through the educational process.

There is lots of great information online at CFF.org. You might want to call the Cystic Fibrosis Foundation They sent me some really good DVDs and books with information about CF. I've replayed the DVDs several times and shown them to my family members and friends.

As others and you have mentioned getting into the right regimen makes a world of difference! Pulmozyme really helped me too. A month after starting Pulmozyme my docs put me on Hypertonic Saline. It's an inhaled salt water solution. Makes you feel like you were surfing and wiped out breathing in a wave! Been there, done that! :) It is great for clearing out your lungs. Mine have been feeling better the past few months than they have for literally years!

Take care, ~Juliet
 
J

Juliet

New member
Hi Charlie, Welcome to CF.com. Sorry about your DX.

I can totally relate to what you're going through. My story about my DX at 43 (several months ago) can be found here: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=33171">http://forums.cysticfibrosis.c...catid=5&threadid=33171</a> It's a journey to accept CF and go through the educational process.

There is lots of great information online at CFF.org. You might want to call the Cystic Fibrosis Foundation They sent me some really good DVDs and books with information about CF. I've replayed the DVDs several times and shown them to my family members and friends.

As others and you have mentioned getting into the right regimen makes a world of difference! Pulmozyme really helped me too. A month after starting Pulmozyme my docs put me on Hypertonic Saline. It's an inhaled salt water solution. Makes you feel like you were surfing and wiped out breathing in a wave! Been there, done that! :) It is great for clearing out your lungs. Mine have been feeling better the past few months than they have for literally years!

Take care, ~Juliet
 
J

Juliet

New member
Hi Charlie, Welcome to CF.com. Sorry about your DX.
<br />
<br />I can totally relate to what you're going through. My story about my DX at 43 (several months ago) can be found here: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=33171">http://forums.cysticfibrosis.c...catid=5&threadid=33171</a> It's a journey to accept CF and go through the educational process.
<br />
<br />There is lots of great information online at CFF.org. You might want to call the Cystic Fibrosis Foundation They sent me some really good DVDs and books with information about CF. I've replayed the DVDs several times and shown them to my family members and friends.
<br />
<br />As others and you have mentioned getting into the right regimen makes a world of difference! Pulmozyme really helped me too. A month after starting Pulmozyme my docs put me on Hypertonic Saline. It's an inhaled salt water solution. Makes you feel like you were surfing and wiped out breathing in a wave! Been there, done that! :) It is great for clearing out your lungs. Mine have been feeling better the past few months than they have for literally years!
<br />
<br />Take care, ~Juliet
 
You must log in or register to reply here.
Top