Need to worry?

vinyrdsong · Jan 6, 2008

My daughter, w/cf 18 years old, recently changed doctors who pretty much has told her that she is very healthy CFer and can't for the life of him understand why she was ever in the hospital when she was younger based on her weight and pfts, so this little girl of mine has decided to completely stop all of her treatments since he made her feel bad for even doing them. Her pfts are around the low 80s, weight great, sugar levels go from 40 to 347 (two hour post) she isn't taking insulin and really is doing pretty well. Able to do the things that she likes to do, which the doctor also told her that if she was really sick she wouldn't be able to do so like other CFers. This has been about 6 months and so far she is really doing very well. Is there something to this? will she be okay after all? For all of these years we have been trying as much as possible to be on top of things, but perhaps he is right? She does culture PA and staph, but that is it. Any thoughts? She was averaging about once to three times a year in the hospital before he met him due to lung infections and G.I. issues, but perhaps we were overreacting, since she is doing so well without being on top of things.

Have a great day!

Christi (mom to an 18 year old beautiful daughter w/cf)

vinyrdsong · Jan 6, 2008

My daughter, w/cf 18 years old, recently changed doctors who pretty much has told her that she is very healthy CFer and can't for the life of him understand why she was ever in the hospital when she was younger based on her weight and pfts, so this little girl of mine has decided to completely stop all of her treatments since he made her feel bad for even doing them. Her pfts are around the low 80s, weight great, sugar levels go from 40 to 347 (two hour post) she isn't taking insulin and really is doing pretty well. Able to do the things that she likes to do, which the doctor also told her that if she was really sick she wouldn't be able to do so like other CFers. This has been about 6 months and so far she is really doing very well. Is there something to this? will she be okay after all? For all of these years we have been trying as much as possible to be on top of things, but perhaps he is right? She does culture PA and staph, but that is it. Any thoughts? She was averaging about once to three times a year in the hospital before he met him due to lung infections and G.I. issues, but perhaps we were overreacting, since she is doing so well without being on top of things.

Have a great day!

Christi (mom to an 18 year old beautiful daughter w/cf)

vinyrdsong · Jan 6, 2008

My daughter, w/cf 18 years old, recently changed doctors who pretty much has told her that she is very healthy CFer and can't for the life of him understand why she was ever in the hospital when she was younger based on her weight and pfts, so this little girl of mine has decided to completely stop all of her treatments since he made her feel bad for even doing them. Her pfts are around the low 80s, weight great, sugar levels go from 40 to 347 (two hour post) she isn't taking insulin and really is doing pretty well. Able to do the things that she likes to do, which the doctor also told her that if she was really sick she wouldn't be able to do so like other CFers. This has been about 6 months and so far she is really doing very well. Is there something to this? will she be okay after all? For all of these years we have been trying as much as possible to be on top of things, but perhaps he is right? She does culture PA and staph, but that is it. Any thoughts? She was averaging about once to three times a year in the hospital before he met him due to lung infections and G.I. issues, but perhaps we were overreacting, since she is doing so well without being on top of things.

Have a great day!

Christi (mom to an 18 year old beautiful daughter w/cf)

vinyrdsong · Jan 6, 2008

My daughter, w/cf 18 years old, recently changed doctors who pretty much has told her that she is very healthy CFer and can't for the life of him understand why she was ever in the hospital when she was younger based on her weight and pfts, so this little girl of mine has decided to completely stop all of her treatments since he made her feel bad for even doing them. Her pfts are around the low 80s, weight great, sugar levels go from 40 to 347 (two hour post) she isn't taking insulin and really is doing pretty well. Able to do the things that she likes to do, which the doctor also told her that if she was really sick she wouldn't be able to do so like other CFers. This has been about 6 months and so far she is really doing very well. Is there something to this? will she be okay after all? For all of these years we have been trying as much as possible to be on top of things, but perhaps he is right? She does culture PA and staph, but that is it. Any thoughts? She was averaging about once to three times a year in the hospital before he met him due to lung infections and G.I. issues, but perhaps we were overreacting, since she is doing so well without being on top of things.

Have a great day!

Christi (mom to an 18 year old beautiful daughter w/cf)

vinyrdsong · Jan 6, 2008

My daughter, w/cf 18 years old, recently changed doctors who pretty much has told her that she is very healthy CFer and can't for the life of him understand why she was ever in the hospital when she was younger based on her weight and pfts, so this little girl of mine has decided to completely stop all of her treatments since he made her feel bad for even doing them. Her pfts are around the low 80s, weight great, sugar levels go from 40 to 347 (two hour post) she isn't taking insulin and really is doing pretty well. Able to do the things that she likes to do, which the doctor also told her that if she was really sick she wouldn't be able to do so like other CFers. This has been about 6 months and so far she is really doing very well. Is there something to this? will she be okay after all? For all of these years we have been trying as much as possible to be on top of things, but perhaps he is right? She does culture PA and staph, but that is it. Any thoughts? She was averaging about once to three times a year in the hospital before he met him due to lung infections and G.I. issues, but perhaps we were overreacting, since she is doing so well without being on top of things.

Have a great day!

Christi (mom to an 18 year old beautiful daughter w/cf)

bagged2drag · Jan 6, 2008

I would question her doctor first off. Although the 80's are pretty good, it is no longer 100%. That means there has been some reduction in her pfts. Also, without a proactive approach, it is only a matter of time before there is a decline or infection. That will leave her a sitting duck. The small infections take their toll just as the large ones do. Granted, she could get lucky and go many years without a decline, but on the other hand, if she's not on top of her care, the decline could come sooner, and there is little turning back once her pfts drop. I would really urge her to continue her treatments.

I felt the same way around that age. I didn't go into the doc for a number of years, still had good pft's but had infection which I kept taking oral abx for (by ways of the walk in clinics). I ended up becoming resistant to most antibiotics and when I did become ill, it was a huge challenge to fight the infection. I went from about 100% at age 18 to 25% at age 21. After 7 years, I have only gotten my pfts back up to an average of 35-40%, which is actually a good improvement.

bagged2drag · Jan 6, 2008

I would question her doctor first off. Although the 80's are pretty good, it is no longer 100%. That means there has been some reduction in her pfts. Also, without a proactive approach, it is only a matter of time before there is a decline or infection. That will leave her a sitting duck. The small infections take their toll just as the large ones do. Granted, she could get lucky and go many years without a decline, but on the other hand, if she's not on top of her care, the decline could come sooner, and there is little turning back once her pfts drop. I would really urge her to continue her treatments.

I felt the same way around that age. I didn't go into the doc for a number of years, still had good pft's but had infection which I kept taking oral abx for (by ways of the walk in clinics). I ended up becoming resistant to most antibiotics and when I did become ill, it was a huge challenge to fight the infection. I went from about 100% at age 18 to 25% at age 21. After 7 years, I have only gotten my pfts back up to an average of 35-40%, which is actually a good improvement.

bagged2drag · Jan 6, 2008

I would question her doctor first off. Although the 80's are pretty good, it is no longer 100%. That means there has been some reduction in her pfts. Also, without a proactive approach, it is only a matter of time before there is a decline or infection. That will leave her a sitting duck. The small infections take their toll just as the large ones do. Granted, she could get lucky and go many years without a decline, but on the other hand, if she's not on top of her care, the decline could come sooner, and there is little turning back once her pfts drop. I would really urge her to continue her treatments.

I felt the same way around that age. I didn't go into the doc for a number of years, still had good pft's but had infection which I kept taking oral abx for (by ways of the walk in clinics). I ended up becoming resistant to most antibiotics and when I did become ill, it was a huge challenge to fight the infection. I went from about 100% at age 18 to 25% at age 21. After 7 years, I have only gotten my pfts back up to an average of 35-40%, which is actually a good improvement.

bagged2drag · Jan 6, 2008

I would question her doctor first off. Although the 80's are pretty good, it is no longer 100%. That means there has been some reduction in her pfts. Also, without a proactive approach, it is only a matter of time before there is a decline or infection. That will leave her a sitting duck. The small infections take their toll just as the large ones do. Granted, she could get lucky and go many years without a decline, but on the other hand, if she's not on top of her care, the decline could come sooner, and there is little turning back once her pfts drop. I would really urge her to continue her treatments.

I felt the same way around that age. I didn't go into the doc for a number of years, still had good pft's but had infection which I kept taking oral abx for (by ways of the walk in clinics). I ended up becoming resistant to most antibiotics and when I did become ill, it was a huge challenge to fight the infection. I went from about 100% at age 18 to 25% at age 21. After 7 years, I have only gotten my pfts back up to an average of 35-40%, which is actually a good improvement.

bagged2drag · Jan 6, 2008

I would question her doctor first off. Although the 80's are pretty good, it is no longer 100%. That means there has been some reduction in her pfts. Also, without a proactive approach, it is only a matter of time before there is a decline or infection. That will leave her a sitting duck. The small infections take their toll just as the large ones do. Granted, she could get lucky and go many years without a decline, but on the other hand, if she's not on top of her care, the decline could come sooner, and there is little turning back once her pfts drop. I would really urge her to continue her treatments.

I felt the same way around that age. I didn't go into the doc for a number of years, still had good pft's but had infection which I kept taking oral abx for (by ways of the walk in clinics). I ended up becoming resistant to most antibiotics and when I did become ill, it was a huge challenge to fight the infection. I went from about 100% at age 18 to 25% at age 21. After 7 years, I have only gotten my pfts back up to an average of 35-40%, which is actually a good improvement.

sarabeth87 · Jan 6, 2008

i was in her position a couple years ago. my doctor did, however, incourage me to always do my treatments. i have always been very healthy and when i turned 18, i moved out of my parents house. i started slacking on my treatments, maybe doing them once or twice a week. this went on for about a year and i didn't even realize that i was getting sicker and sicker. my PFTs were in the 90s and now, two years later they have decreased to the 60s and 70s. the doctor is very wrong for making her feel guilty for doing what she is suppose to.

sarabeth87 · Jan 6, 2008

i was in her position a couple years ago. my doctor did, however, incourage me to always do my treatments. i have always been very healthy and when i turned 18, i moved out of my parents house. i started slacking on my treatments, maybe doing them once or twice a week. this went on for about a year and i didn't even realize that i was getting sicker and sicker. my PFTs were in the 90s and now, two years later they have decreased to the 60s and 70s. the doctor is very wrong for making her feel guilty for doing what she is suppose to.

sarabeth87 · Jan 6, 2008

i was in her position a couple years ago. my doctor did, however, incourage me to always do my treatments. i have always been very healthy and when i turned 18, i moved out of my parents house. i started slacking on my treatments, maybe doing them once or twice a week. this went on for about a year and i didn't even realize that i was getting sicker and sicker. my PFTs were in the 90s and now, two years later they have decreased to the 60s and 70s. the doctor is very wrong for making her feel guilty for doing what she is suppose to.

sarabeth87 · Jan 6, 2008

i was in her position a couple years ago. my doctor did, however, incourage me to always do my treatments. i have always been very healthy and when i turned 18, i moved out of my parents house. i started slacking on my treatments, maybe doing them once or twice a week. this went on for about a year and i didn't even realize that i was getting sicker and sicker. my PFTs were in the 90s and now, two years later they have decreased to the 60s and 70s. the doctor is very wrong for making her feel guilty for doing what she is suppose to.

sarabeth87 · Jan 6, 2008

i was in her position a couple years ago. my doctor did, however, incourage me to always do my treatments. i have always been very healthy and when i turned 18, i moved out of my parents house. i started slacking on my treatments, maybe doing them once or twice a week. this went on for about a year and i didn't even realize that i was getting sicker and sicker. my PFTs were in the 90s and now, two years later they have decreased to the 60s and 70s. the doctor is very wrong for making her feel guilty for doing what she is suppose to.

jodijp · Jan 6, 2008

Hi Christy, welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Hmmm, I think the reason you're daughter is probably doing so well now at 18 is because you and her former DR. took very good care of her all those years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teen years are tough. Not only do they know it all and have no fear <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> but think they are above treatments and don't need them anymore. It's a natural human reaction that just about every CFer goes through - it's called denial. Rest assured it will catch up to her in time, and not in a good way. <img src="i/expressions/face-icon-small-sad.gif" border="0"> By not doing any treatments, she may be putting herself at risk for irreversible damage.

Also just culturing PA and Staph still should be a concern not to be taken lightly. Neither is 347 BS, that's not normal and not 'doing well' with her BS control.

I don't think you were ever overreacting. It seems to me you were in good hands for a lot of years and now the new doc has 'given' her license to be lax.

Hope you can get her back on track with her treatments and she stays healthy in the mean time.
Good luck Christi <img src="i/expressions/face-icon-small-smile.gif" border="0">

jodijp · Jan 6, 2008

Hi Christy, welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Hmmm, I think the reason you're daughter is probably doing so well now at 18 is because you and her former DR. took very good care of her all those years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teen years are tough. Not only do they know it all and have no fear <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> but think they are above treatments and don't need them anymore. It's a natural human reaction that just about every CFer goes through - it's called denial. Rest assured it will catch up to her in time, and not in a good way. <img src="i/expressions/face-icon-small-sad.gif" border="0"> By not doing any treatments, she may be putting herself at risk for irreversible damage.

Also just culturing PA and Staph still should be a concern not to be taken lightly. Neither is 347 BS, that's not normal and not 'doing well' with her BS control.

I don't think you were ever overreacting. It seems to me you were in good hands for a lot of years and now the new doc has 'given' her license to be lax.

Hope you can get her back on track with her treatments and she stays healthy in the mean time.
Good luck Christi <img src="i/expressions/face-icon-small-smile.gif" border="0">

jodijp · Jan 6, 2008

Hi Christy, welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Hmmm, I think the reason you're daughter is probably doing so well now at 18 is because you and her former DR. took very good care of her all those years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teen years are tough. Not only do they know it all and have no fear <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> but think they are above treatments and don't need them anymore. It's a natural human reaction that just about every CFer goes through - it's called denial. Rest assured it will catch up to her in time, and not in a good way. <img src="i/expressions/face-icon-small-sad.gif" border="0"> By not doing any treatments, she may be putting herself at risk for irreversible damage.

Also just culturing PA and Staph still should be a concern not to be taken lightly. Neither is 347 BS, that's not normal and not 'doing well' with her BS control.

I don't think you were ever overreacting. It seems to me you were in good hands for a lot of years and now the new doc has 'given' her license to be lax.

Hope you can get her back on track with her treatments and she stays healthy in the mean time.
Good luck Christi <img src="i/expressions/face-icon-small-smile.gif" border="0">

jodijp · Jan 6, 2008

Hi Christy, welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Hmmm, I think the reason you're daughter is probably doing so well now at 18 is because you and her former DR. took very good care of her all those years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teen years are tough. Not only do they know it all and have no fear <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> but think they are above treatments and don't need them anymore. It's a natural human reaction that just about every CFer goes through - it's called denial. Rest assured it will catch up to her in time, and not in a good way. <img src="i/expressions/face-icon-small-sad.gif" border="0"> By not doing any treatments, she may be putting herself at risk for irreversible damage.

Also just culturing PA and Staph still should be a concern not to be taken lightly. Neither is 347 BS, that's not normal and not 'doing well' with her BS control.

I don't think you were ever overreacting. It seems to me you were in good hands for a lot of years and now the new doc has 'given' her license to be lax.

Hope you can get her back on track with her treatments and she stays healthy in the mean time.
Good luck Christi <img src="i/expressions/face-icon-small-smile.gif" border="0">

jodijp · Jan 6, 2008

Hi Christy, welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Hmmm, I think the reason you're daughter is probably doing so well now at 18 is because you and her former DR. took very good care of her all those years. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teen years are tough. Not only do they know it all and have no fear <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> but think they are above treatments and don't need them anymore. It's a natural human reaction that just about every CFer goes through - it's called denial. Rest assured it will catch up to her in time, and not in a good way. <img src="i/expressions/face-icon-small-sad.gif" border="0"> By not doing any treatments, she may be putting herself at risk for irreversible damage.

Also just culturing PA and Staph still should be a concern not to be taken lightly. Neither is 347 BS, that's not normal and not 'doing well' with her BS control.

I don't think you were ever overreacting. It seems to me you were in good hands for a lot of years and now the new doc has 'given' her license to be lax.

Hope you can get her back on track with her treatments and she stays healthy in the mean time.
Good luck Christi <img src="i/expressions/face-icon-small-smile.gif" border="0">

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