two things

wanderlost

New member
1) re: TOBI

Is TOBi purely maintnance or does it have a cumulative effect? Meaning, will I notice more improvement the longer I do it? I ask because I am now on my 2nd cycle and I feel like crap: more congested than ever, wheezy. I have found using my albuterol before and after a treatment helps, but this kinda sucks: so am I just breaking up a bunch of PA areas and it's going to get better? or am I just reacting badly to it? er whut?

2) I was just curious: what can you and can't you relate to about Cf with others? Such as, I can't relate to people who have trouble maintainging weight, need feeding tubes, etc. as I have never had that, BUt I totally relate to the issues about telling whether or not you have CF and coughing issues because those are really big in my life - so I was just curious as to what others took from this site and what they leave behind.
 

wanderlost

New member
1) re: TOBI

Is TOBi purely maintnance or does it have a cumulative effect? Meaning, will I notice more improvement the longer I do it? I ask because I am now on my 2nd cycle and I feel like crap: more congested than ever, wheezy. I have found using my albuterol before and after a treatment helps, but this kinda sucks: so am I just breaking up a bunch of PA areas and it's going to get better? or am I just reacting badly to it? er whut?

2) I was just curious: what can you and can't you relate to about Cf with others? Such as, I can't relate to people who have trouble maintainging weight, need feeding tubes, etc. as I have never had that, BUt I totally relate to the issues about telling whether or not you have CF and coughing issues because those are really big in my life - so I was just curious as to what others took from this site and what they leave behind.
 

wanderlost

New member
1) re: TOBI

Is TOBi purely maintnance or does it have a cumulative effect? Meaning, will I notice more improvement the longer I do it? I ask because I am now on my 2nd cycle and I feel like crap: more congested than ever, wheezy. I have found using my albuterol before and after a treatment helps, but this kinda sucks: so am I just breaking up a bunch of PA areas and it's going to get better? or am I just reacting badly to it? er whut?

2) I was just curious: what can you and can't you relate to about Cf with others? Such as, I can't relate to people who have trouble maintainging weight, need feeding tubes, etc. as I have never had that, BUt I totally relate to the issues about telling whether or not you have CF and coughing issues because those are really big in my life - so I was just curious as to what others took from this site and what they leave behind.
 

wanderlost

New member
1) re: TOBI

Is TOBi purely maintnance or does it have a cumulative effect? Meaning, will I notice more improvement the longer I do it? I ask because I am now on my 2nd cycle and I feel like crap: more congested than ever, wheezy. I have found using my albuterol before and after a treatment helps, but this kinda sucks: so am I just breaking up a bunch of PA areas and it's going to get better? or am I just reacting badly to it? er whut?

2) I was just curious: what can you and can't you relate to about Cf with others? Such as, I can't relate to people who have trouble maintainging weight, need feeding tubes, etc. as I have never had that, BUt I totally relate to the issues about telling whether or not you have CF and coughing issues because those are really big in my life - so I was just curious as to what others took from this site and what they leave behind.
 

wanderlost

New member
1) re: TOBI

Is TOBi purely maintnance or does it have a cumulative effect? Meaning, will I notice more improvement the longer I do it? I ask because I am now on my 2nd cycle and I feel like crap: more congested than ever, wheezy. I have found using my albuterol before and after a treatment helps, but this kinda sucks: so am I just breaking up a bunch of PA areas and it's going to get better? or am I just reacting badly to it? er whut?

2) I was just curious: what can you and can't you relate to about Cf with others? Such as, I can't relate to people who have trouble maintainging weight, need feeding tubes, etc. as I have never had that, BUt I totally relate to the issues about telling whether or not you have CF and coughing issues because those are really big in my life - so I was just curious as to what others took from this site and what they leave behind.
 
W

welshwitch

Guest
Hi!

don't do TObi, so can't really add any input on that one!
but #2 I think is a big one.

I have what my Dr. and therapist calls "CF Lite" but that doesn't make the psychological effects any easier. I too don't have issues w/ weight or intense stuff like feeding tubes, etc. (Hopefully never, but you must be realistic). I just take antibiotics when i feel crappy and struggle w/ a cough too and allergy stuff. Unfortunately it's really easy to downplay and detach from, especially when you take pills like clockwork and function the same as everyone else. But things start to come out of the wordwork when I have a cough that doesn't go away or I tell my boss about my "condition" and she just looks at me, shocked, like "Why are you telling me this?"

I try to take it a day at a time and also not dwell on the negative. I try to remember that everyone struggles with "something" and this is mine. I also try to keep a close support system around, ie my family and boyfriend and a great group of girlfriends. I also talk once every two weeks to my counselor about troubleshooting CF issues. I try to not isolate myself and stigmatize myself and beat myself up for having this conditition. One thing I'm currently working on is not cutting myself short with respect to career goals and what I am capable of.

--welshwitch, 27, female
 
W

welshwitch

Guest
Hi!

don't do TObi, so can't really add any input on that one!
but #2 I think is a big one.

I have what my Dr. and therapist calls "CF Lite" but that doesn't make the psychological effects any easier. I too don't have issues w/ weight or intense stuff like feeding tubes, etc. (Hopefully never, but you must be realistic). I just take antibiotics when i feel crappy and struggle w/ a cough too and allergy stuff. Unfortunately it's really easy to downplay and detach from, especially when you take pills like clockwork and function the same as everyone else. But things start to come out of the wordwork when I have a cough that doesn't go away or I tell my boss about my "condition" and she just looks at me, shocked, like "Why are you telling me this?"

I try to take it a day at a time and also not dwell on the negative. I try to remember that everyone struggles with "something" and this is mine. I also try to keep a close support system around, ie my family and boyfriend and a great group of girlfriends. I also talk once every two weeks to my counselor about troubleshooting CF issues. I try to not isolate myself and stigmatize myself and beat myself up for having this conditition. One thing I'm currently working on is not cutting myself short with respect to career goals and what I am capable of.

--welshwitch, 27, female
 
W

welshwitch

Guest
Hi!

don't do TObi, so can't really add any input on that one!
but #2 I think is a big one.

I have what my Dr. and therapist calls "CF Lite" but that doesn't make the psychological effects any easier. I too don't have issues w/ weight or intense stuff like feeding tubes, etc. (Hopefully never, but you must be realistic). I just take antibiotics when i feel crappy and struggle w/ a cough too and allergy stuff. Unfortunately it's really easy to downplay and detach from, especially when you take pills like clockwork and function the same as everyone else. But things start to come out of the wordwork when I have a cough that doesn't go away or I tell my boss about my "condition" and she just looks at me, shocked, like "Why are you telling me this?"

I try to take it a day at a time and also not dwell on the negative. I try to remember that everyone struggles with "something" and this is mine. I also try to keep a close support system around, ie my family and boyfriend and a great group of girlfriends. I also talk once every two weeks to my counselor about troubleshooting CF issues. I try to not isolate myself and stigmatize myself and beat myself up for having this conditition. One thing I'm currently working on is not cutting myself short with respect to career goals and what I am capable of.

--welshwitch, 27, female
 
W

welshwitch

Guest
Hi!

don't do TObi, so can't really add any input on that one!
but #2 I think is a big one.

I have what my Dr. and therapist calls "CF Lite" but that doesn't make the psychological effects any easier. I too don't have issues w/ weight or intense stuff like feeding tubes, etc. (Hopefully never, but you must be realistic). I just take antibiotics when i feel crappy and struggle w/ a cough too and allergy stuff. Unfortunately it's really easy to downplay and detach from, especially when you take pills like clockwork and function the same as everyone else. But things start to come out of the wordwork when I have a cough that doesn't go away or I tell my boss about my "condition" and she just looks at me, shocked, like "Why are you telling me this?"

I try to take it a day at a time and also not dwell on the negative. I try to remember that everyone struggles with "something" and this is mine. I also try to keep a close support system around, ie my family and boyfriend and a great group of girlfriends. I also talk once every two weeks to my counselor about troubleshooting CF issues. I try to not isolate myself and stigmatize myself and beat myself up for having this conditition. One thing I'm currently working on is not cutting myself short with respect to career goals and what I am capable of.

--welshwitch, 27, female
 
W

welshwitch

Guest
Hi!

don't do TObi, so can't really add any input on that one!
but #2 I think is a big one.

I have what my Dr. and therapist calls "CF Lite" but that doesn't make the psychological effects any easier. I too don't have issues w/ weight or intense stuff like feeding tubes, etc. (Hopefully never, but you must be realistic). I just take antibiotics when i feel crappy and struggle w/ a cough too and allergy stuff. Unfortunately it's really easy to downplay and detach from, especially when you take pills like clockwork and function the same as everyone else. But things start to come out of the wordwork when I have a cough that doesn't go away or I tell my boss about my "condition" and she just looks at me, shocked, like "Why are you telling me this?"

I try to take it a day at a time and also not dwell on the negative. I try to remember that everyone struggles with "something" and this is mine. I also try to keep a close support system around, ie my family and boyfriend and a great group of girlfriends. I also talk once every two weeks to my counselor about troubleshooting CF issues. I try to not isolate myself and stigmatize myself and beat myself up for having this conditition. One thing I'm currently working on is not cutting myself short with respect to career goals and what I am capable of.

--welshwitch, 27, female
 

thefrogprincess

New member
I only do Tobi a couple times a year maybe....but I participated in a study last year to find out if it has a cumulative effect. So, they probably don't really know yet.
 

thefrogprincess

New member
I only do Tobi a couple times a year maybe....but I participated in a study last year to find out if it has a cumulative effect. So, they probably don't really know yet.
 

thefrogprincess

New member
I only do Tobi a couple times a year maybe....but I participated in a study last year to find out if it has a cumulative effect. So, they probably don't really know yet.
 

thefrogprincess

New member
I only do Tobi a couple times a year maybe....but I participated in a study last year to find out if it has a cumulative effect. So, they probably don't really know yet.
 

thefrogprincess

New member
I only do Tobi a couple times a year maybe....but I participated in a study last year to find out if it has a cumulative effect. So, they probably don't really know yet.
 

Landy

New member
On the TOBI....I did TOBI for a couple of years and at first it was all hunky-dory, but then I started noticing exactly what you said...such extreme SOB that I finally had to weigh the option of "is this crappy quality of life I experience while on TOBI really worth the benefit" (assuming there was some benefit) and I decided that it was not worth it to me and quit.
I even wonder if any permanent damage was done during these months that I couldn't breath well & my doctor assured me that it wasn't damaging....I'd still be open to a 2nd opinion on that<img src="i/expressions/face-icon-small-wink.gif" border="0">.

On the other point...yes, I, too can't relate to some things that others deal with, but I figure my time's a comin' to deal with that stuff so I try to help where I can & store the rest away in my forgetful brain for later usage!
 

Landy

New member
On the TOBI....I did TOBI for a couple of years and at first it was all hunky-dory, but then I started noticing exactly what you said...such extreme SOB that I finally had to weigh the option of "is this crappy quality of life I experience while on TOBI really worth the benefit" (assuming there was some benefit) and I decided that it was not worth it to me and quit.
I even wonder if any permanent damage was done during these months that I couldn't breath well & my doctor assured me that it wasn't damaging....I'd still be open to a 2nd opinion on that<img src="i/expressions/face-icon-small-wink.gif" border="0">.

On the other point...yes, I, too can't relate to some things that others deal with, but I figure my time's a comin' to deal with that stuff so I try to help where I can & store the rest away in my forgetful brain for later usage!
 

Landy

New member
On the TOBI....I did TOBI for a couple of years and at first it was all hunky-dory, but then I started noticing exactly what you said...such extreme SOB that I finally had to weigh the option of "is this crappy quality of life I experience while on TOBI really worth the benefit" (assuming there was some benefit) and I decided that it was not worth it to me and quit.
I even wonder if any permanent damage was done during these months that I couldn't breath well & my doctor assured me that it wasn't damaging....I'd still be open to a 2nd opinion on that<img src="i/expressions/face-icon-small-wink.gif" border="0">.

On the other point...yes, I, too can't relate to some things that others deal with, but I figure my time's a comin' to deal with that stuff so I try to help where I can & store the rest away in my forgetful brain for later usage!
 

Landy

New member
On the TOBI....I did TOBI for a couple of years and at first it was all hunky-dory, but then I started noticing exactly what you said...such extreme SOB that I finally had to weigh the option of "is this crappy quality of life I experience while on TOBI really worth the benefit" (assuming there was some benefit) and I decided that it was not worth it to me and quit.
I even wonder if any permanent damage was done during these months that I couldn't breath well & my doctor assured me that it wasn't damaging....I'd still be open to a 2nd opinion on that<img src="i/expressions/face-icon-small-wink.gif" border="0">.

On the other point...yes, I, too can't relate to some things that others deal with, but I figure my time's a comin' to deal with that stuff so I try to help where I can & store the rest away in my forgetful brain for later usage!
 

Landy

New member
On the TOBI....I did TOBI for a couple of years and at first it was all hunky-dory, but then I started noticing exactly what you said...such extreme SOB that I finally had to weigh the option of "is this crappy quality of life I experience while on TOBI really worth the benefit" (assuming there was some benefit) and I decided that it was not worth it to me and quit.
I even wonder if any permanent damage was done during these months that I couldn't breath well & my doctor assured me that it wasn't damaging....I'd still be open to a 2nd opinion on that<img src="i/expressions/face-icon-small-wink.gif" border="0">.

On the other point...yes, I, too can't relate to some things that others deal with, but I figure my time's a comin' to deal with that stuff so I try to help where I can & store the rest away in my forgetful brain for later usage!
 
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