question kinda hard to explain

M

marchcutie

New member
ok, i hav a sister and she also has CF. i am affected by CF most in my digestion,,, u no absorbing enzymes and nutrients yada yada yada. my sister however is mostly affected in the lungs,,, she has a WAY harder time breathing than i do.
so i was wondering is it possible to hav some symptoms of CF and not others? i mean if i skip a treatment or two im fine! but my sis skips one and she starts coughing like crazy and it makes it super hard for her to breathe.
it might sound strange but i was just wondering b/c if i dont hav the lung symptoms then i can cut out my vest and flutter treatments all together! that would be a total time saver!!!
 
M

marchcutie

New member
ok, i hav a sister and she also has CF. i am affected by CF most in my digestion,,, u no absorbing enzymes and nutrients yada yada yada. my sister however is mostly affected in the lungs,,, she has a WAY harder time breathing than i do.
so i was wondering is it possible to hav some symptoms of CF and not others? i mean if i skip a treatment or two im fine! but my sis skips one and she starts coughing like crazy and it makes it super hard for her to breathe.
it might sound strange but i was just wondering b/c if i dont hav the lung symptoms then i can cut out my vest and flutter treatments all together! that would be a total time saver!!!
 
M

marchcutie

New member
ok, i hav a sister and she also has CF. i am affected by CF most in my digestion,,, u no absorbing enzymes and nutrients yada yada yada. my sister however is mostly affected in the lungs,,, she has a WAY harder time breathing than i do.
so i was wondering is it possible to hav some symptoms of CF and not others? i mean if i skip a treatment or two im fine! but my sis skips one and she starts coughing like crazy and it makes it super hard for her to breathe.
it might sound strange but i was just wondering b/c if i dont hav the lung symptoms then i can cut out my vest and flutter treatments all together! that would be a total time saver!!!
 
M

marchcutie

New member
ok, i hav a sister and she also has CF. i am affected by CF most in my digestion,,, u no absorbing enzymes and nutrients yada yada yada. my sister however is mostly affected in the lungs,,, she has a WAY harder time breathing than i do.
so i was wondering is it possible to hav some symptoms of CF and not others? i mean if i skip a treatment or two im fine! but my sis skips one and she starts coughing like crazy and it makes it super hard for her to breathe.
it might sound strange but i was just wondering b/c if i dont hav the lung symptoms then i can cut out my vest and flutter treatments all together! that would be a total time saver!!!
 
M

marchcutie

New member
ok, i hav a sister and she also has CF. i am affected by CF most in my digestion,,, u no absorbing enzymes and nutrients yada yada yada. my sister however is mostly affected in the lungs,,, she has a WAY harder time breathing than i do.
<br />so i was wondering is it possible to hav some symptoms of CF and not others? i mean if i skip a treatment or two im fine! but my sis skips one and she starts coughing like crazy and it makes it super hard for her to breathe.
<br />it might sound strange but i was just wondering b/c if i dont hav the lung symptoms then i can cut out my vest and flutter treatments all together! that would be a total time saver!!!
 
A

ashmomo

New member
It is progressive, you should always continue to do your treatments for preventative. You could at any time represent with lung problems. I am glad to hear you don't have any right now, but your best bet is to continue to do your treatments to stay that way! My daughters are the same way, well for the most part. Ashlee didn't have any lung involvement for a while, while Jordin had from the get go. Both have digestion issues though.

STAY HEALTHY!!! DO your treatments!
 
A

ashmomo

New member
It is progressive, you should always continue to do your treatments for preventative. You could at any time represent with lung problems. I am glad to hear you don't have any right now, but your best bet is to continue to do your treatments to stay that way! My daughters are the same way, well for the most part. Ashlee didn't have any lung involvement for a while, while Jordin had from the get go. Both have digestion issues though.

STAY HEALTHY!!! DO your treatments!
 
A

ashmomo

New member
It is progressive, you should always continue to do your treatments for preventative. You could at any time represent with lung problems. I am glad to hear you don't have any right now, but your best bet is to continue to do your treatments to stay that way! My daughters are the same way, well for the most part. Ashlee didn't have any lung involvement for a while, while Jordin had from the get go. Both have digestion issues though.

STAY HEALTHY!!! DO your treatments!
 
A

ashmomo

New member
It is progressive, you should always continue to do your treatments for preventative. You could at any time represent with lung problems. I am glad to hear you don't have any right now, but your best bet is to continue to do your treatments to stay that way! My daughters are the same way, well for the most part. Ashlee didn't have any lung involvement for a while, while Jordin had from the get go. Both have digestion issues though.

STAY HEALTHY!!! DO your treatments!
 
A

ashmomo

New member
It is progressive, you should always continue to do your treatments for preventative. You could at any time represent with lung problems. I am glad to hear you don't have any right now, but your best bet is to continue to do your treatments to stay that way! My daughters are the same way, well for the most part. Ashlee didn't have any lung involvement for a while, while Jordin had from the get go. Both have digestion issues though.
<br />
<br />STAY HEALTHY!!! DO your treatments!
 
B

bethylove

Guest
You are exactly like Me! My sister and I both have CF. I have way more digestive issues, liver issues, Diabetes, etc. She has a clean bill of health except for her lungs. It always seemed to be that way. My FEV1 was always WAY higher than hers, and I never felt like I needed to do the vest or inhaled meds, and yup, in my teens I would skip them on a regular basis. WELL, I still have all my body issues, but now, over time my lungs are beginning to take a hit. I've dropped from FEV1 of low 80's to low 60's in about year or so. Not to mention a few months ago I blew numbers in the 40's!!! EEK. I'm also having much more lung infections now too. Granted, I contracted MRSA 2 years ago, so that could contribute to the decline, but CF is very hard disease to predict. I never thought I'd have a baseline low 60's until my 30's, yet here I am 21.

So, point is, even though it may seem like you have ZERO lung involvement -- you don't. You never know when you might catch a nasty bug, or something starts growing that is very resistant to antibiotics. So it's better to be safe than sorry, and keep up with all your inhaled meds/vest since you don't want to catch nasty lung bugs. ESPECIALLy if your sister has a lot of lung involvement -- it will be easier for her to catch a nasty bug and then since you're in such close proximity in turn you'd be much more likely to catch it. That's a main reason why CFer's aren't 'allowed' or it's frowned upon to meet or be with other CFer's -- the sharing of germs. Well, you live with another CFer so keep it in mind you have to work twice as hard to keep yourself healthy because you're constantly exposed to her CF germs, that may not be the same as yours.

Keep up the hard work, you'll be glad you did a few years down the road! =) Promise.
 
B

bethylove

Guest
You are exactly like Me! My sister and I both have CF. I have way more digestive issues, liver issues, Diabetes, etc. She has a clean bill of health except for her lungs. It always seemed to be that way. My FEV1 was always WAY higher than hers, and I never felt like I needed to do the vest or inhaled meds, and yup, in my teens I would skip them on a regular basis. WELL, I still have all my body issues, but now, over time my lungs are beginning to take a hit. I've dropped from FEV1 of low 80's to low 60's in about year or so. Not to mention a few months ago I blew numbers in the 40's!!! EEK. I'm also having much more lung infections now too. Granted, I contracted MRSA 2 years ago, so that could contribute to the decline, but CF is very hard disease to predict. I never thought I'd have a baseline low 60's until my 30's, yet here I am 21.

So, point is, even though it may seem like you have ZERO lung involvement -- you don't. You never know when you might catch a nasty bug, or something starts growing that is very resistant to antibiotics. So it's better to be safe than sorry, and keep up with all your inhaled meds/vest since you don't want to catch nasty lung bugs. ESPECIALLy if your sister has a lot of lung involvement -- it will be easier for her to catch a nasty bug and then since you're in such close proximity in turn you'd be much more likely to catch it. That's a main reason why CFer's aren't 'allowed' or it's frowned upon to meet or be with other CFer's -- the sharing of germs. Well, you live with another CFer so keep it in mind you have to work twice as hard to keep yourself healthy because you're constantly exposed to her CF germs, that may not be the same as yours.

Keep up the hard work, you'll be glad you did a few years down the road! =) Promise.
 
B

bethylove

Guest
You are exactly like Me! My sister and I both have CF. I have way more digestive issues, liver issues, Diabetes, etc. She has a clean bill of health except for her lungs. It always seemed to be that way. My FEV1 was always WAY higher than hers, and I never felt like I needed to do the vest or inhaled meds, and yup, in my teens I would skip them on a regular basis. WELL, I still have all my body issues, but now, over time my lungs are beginning to take a hit. I've dropped from FEV1 of low 80's to low 60's in about year or so. Not to mention a few months ago I blew numbers in the 40's!!! EEK. I'm also having much more lung infections now too. Granted, I contracted MRSA 2 years ago, so that could contribute to the decline, but CF is very hard disease to predict. I never thought I'd have a baseline low 60's until my 30's, yet here I am 21.

So, point is, even though it may seem like you have ZERO lung involvement -- you don't. You never know when you might catch a nasty bug, or something starts growing that is very resistant to antibiotics. So it's better to be safe than sorry, and keep up with all your inhaled meds/vest since you don't want to catch nasty lung bugs. ESPECIALLy if your sister has a lot of lung involvement -- it will be easier for her to catch a nasty bug and then since you're in such close proximity in turn you'd be much more likely to catch it. That's a main reason why CFer's aren't 'allowed' or it's frowned upon to meet or be with other CFer's -- the sharing of germs. Well, you live with another CFer so keep it in mind you have to work twice as hard to keep yourself healthy because you're constantly exposed to her CF germs, that may not be the same as yours.

Keep up the hard work, you'll be glad you did a few years down the road! =) Promise.
 
B

bethylove

Guest
You are exactly like Me! My sister and I both have CF. I have way more digestive issues, liver issues, Diabetes, etc. She has a clean bill of health except for her lungs. It always seemed to be that way. My FEV1 was always WAY higher than hers, and I never felt like I needed to do the vest or inhaled meds, and yup, in my teens I would skip them on a regular basis. WELL, I still have all my body issues, but now, over time my lungs are beginning to take a hit. I've dropped from FEV1 of low 80's to low 60's in about year or so. Not to mention a few months ago I blew numbers in the 40's!!! EEK. I'm also having much more lung infections now too. Granted, I contracted MRSA 2 years ago, so that could contribute to the decline, but CF is very hard disease to predict. I never thought I'd have a baseline low 60's until my 30's, yet here I am 21.

So, point is, even though it may seem like you have ZERO lung involvement -- you don't. You never know when you might catch a nasty bug, or something starts growing that is very resistant to antibiotics. So it's better to be safe than sorry, and keep up with all your inhaled meds/vest since you don't want to catch nasty lung bugs. ESPECIALLy if your sister has a lot of lung involvement -- it will be easier for her to catch a nasty bug and then since you're in such close proximity in turn you'd be much more likely to catch it. That's a main reason why CFer's aren't 'allowed' or it's frowned upon to meet or be with other CFer's -- the sharing of germs. Well, you live with another CFer so keep it in mind you have to work twice as hard to keep yourself healthy because you're constantly exposed to her CF germs, that may not be the same as yours.

Keep up the hard work, you'll be glad you did a few years down the road! =) Promise.
 
B

bethylove

Guest
You are exactly like Me! My sister and I both have CF. I have way more digestive issues, liver issues, Diabetes, etc. She has a clean bill of health except for her lungs. It always seemed to be that way. My FEV1 was always WAY higher than hers, and I never felt like I needed to do the vest or inhaled meds, and yup, in my teens I would skip them on a regular basis. WELL, I still have all my body issues, but now, over time my lungs are beginning to take a hit. I've dropped from FEV1 of low 80's to low 60's in about year or so. Not to mention a few months ago I blew numbers in the 40's!!! EEK. I'm also having much more lung infections now too. Granted, I contracted MRSA 2 years ago, so that could contribute to the decline, but CF is very hard disease to predict. I never thought I'd have a baseline low 60's until my 30's, yet here I am 21.
<br />
<br />So, point is, even though it may seem like you have ZERO lung involvement -- you don't. You never know when you might catch a nasty bug, or something starts growing that is very resistant to antibiotics. So it's better to be safe than sorry, and keep up with all your inhaled meds/vest since you don't want to catch nasty lung bugs. ESPECIALLy if your sister has a lot of lung involvement -- it will be easier for her to catch a nasty bug and then since you're in such close proximity in turn you'd be much more likely to catch it. That's a main reason why CFer's aren't 'allowed' or it's frowned upon to meet or be with other CFer's -- the sharing of germs. Well, you live with another CFer so keep it in mind you have to work twice as hard to keep yourself healthy because you're constantly exposed to her CF germs, that may not be the same as yours.
<br />
<br />Keep up the hard work, you'll be glad you did a few years down the road! =) Promise.
 
J

jbrandonAW

New member
Yup like they said.

You know why MOST cfers die in there 20's? Its b/c as teens we felt fine and didn't do our stuff. My lung function 1 week ago was in the 40's. I have put in alot of hardwork NOW to bring it back into the 50's. When I was young it was NOTHING to get sick and bounce right back.

Also you need to keep yourself healthier for your sisters health b/c if she ends up catching a bad bug b/c she was sick with something THEN you could catch it too. It only takes ONE bad bug to wipe you out!

CF is a lung disease, plan and simple. Yes some peole don't have GI problems BUT everyone gets lung problems. So stay proactive now.
 
J

jbrandonAW

New member
Yup like they said.

You know why MOST cfers die in there 20's? Its b/c as teens we felt fine and didn't do our stuff. My lung function 1 week ago was in the 40's. I have put in alot of hardwork NOW to bring it back into the 50's. When I was young it was NOTHING to get sick and bounce right back.

Also you need to keep yourself healthier for your sisters health b/c if she ends up catching a bad bug b/c she was sick with something THEN you could catch it too. It only takes ONE bad bug to wipe you out!

CF is a lung disease, plan and simple. Yes some peole don't have GI problems BUT everyone gets lung problems. So stay proactive now.
 
J

jbrandonAW

New member
Yup like they said.

You know why MOST cfers die in there 20's? Its b/c as teens we felt fine and didn't do our stuff. My lung function 1 week ago was in the 40's. I have put in alot of hardwork NOW to bring it back into the 50's. When I was young it was NOTHING to get sick and bounce right back.

Also you need to keep yourself healthier for your sisters health b/c if she ends up catching a bad bug b/c she was sick with something THEN you could catch it too. It only takes ONE bad bug to wipe you out!

CF is a lung disease, plan and simple. Yes some peole don't have GI problems BUT everyone gets lung problems. So stay proactive now.
 
J

jbrandonAW

New member
Yup like they said.

You know why MOST cfers die in there 20's? Its b/c as teens we felt fine and didn't do our stuff. My lung function 1 week ago was in the 40's. I have put in alot of hardwork NOW to bring it back into the 50's. When I was young it was NOTHING to get sick and bounce right back.

Also you need to keep yourself healthier for your sisters health b/c if she ends up catching a bad bug b/c she was sick with something THEN you could catch it too. It only takes ONE bad bug to wipe you out!

CF is a lung disease, plan and simple. Yes some peole don't have GI problems BUT everyone gets lung problems. So stay proactive now.
 
J

jbrandonAW

New member
Yup like they said.
<br />
<br />You know why MOST cfers die in there 20's? Its b/c as teens we felt fine and didn't do our stuff. My lung function 1 week ago was in the 40's. I have put in alot of hardwork NOW to bring it back into the 50's. When I was young it was NOTHING to get sick and bounce right back.
<br />
<br />Also you need to keep yourself healthier for your sisters health b/c if she ends up catching a bad bug b/c she was sick with something THEN you could catch it too. It only takes ONE bad bug to wipe you out!
<br />
<br />CF is a lung disease, plan and simple. Yes some peole don't have GI problems BUT everyone gets lung problems. So stay proactive now.
 
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