Need to worry?

Diane · Jan 6, 2008

Hi Christi,
Wow i dont know where to start. When you ask will she be ok afterall ,i can safely say that she will not be ok if she continues to do nothing to treat her cf. I myself was a very healthy cf'er all my younger years without any type of treatment, till it caught up to me in my late 20's early 30's. Unfortunately cf being a chronic progressive disease, means it will always be there and even with the best of care, it will progress. I was in denial about that fact for many many years. Apparently your daughter did so well all her life because she was taking proper care of herself and doing what she needed to do. Her pft's being in the low 80's sounds great to me ( mine are in the 40's) But It isnt 100% like someone else said so it does show she has some lung damage already done. I cant imagine a cf Dr. allowing / almost encouraging the cf patient to think it is ok to be lax about the whole treatment thing. Blood sugars in the 347 range inst good either. I do have that problem on rare occasion, but if your daughter is having those kinds of numbers often, then it sounds like she may need some insulin. When you said perhaps we were overreacting to your daughter being hospitalized when she had lung infections or G.I. issues, believe me you werent overreating, you were being proactive. Its what kept your daughter as well as she is today. I would encourage you to try to get your daughter to come on this site herself so she can learn more about cf and ways to treat it and how important it is to treat it.

Diane · Jan 6, 2008

Hi Christi,
Wow i dont know where to start. When you ask will she be ok afterall ,i can safely say that she will not be ok if she continues to do nothing to treat her cf. I myself was a very healthy cf'er all my younger years without any type of treatment, till it caught up to me in my late 20's early 30's. Unfortunately cf being a chronic progressive disease, means it will always be there and even with the best of care, it will progress. I was in denial about that fact for many many years. Apparently your daughter did so well all her life because she was taking proper care of herself and doing what she needed to do. Her pft's being in the low 80's sounds great to me ( mine are in the 40's) But It isnt 100% like someone else said so it does show she has some lung damage already done. I cant imagine a cf Dr. allowing / almost encouraging the cf patient to think it is ok to be lax about the whole treatment thing. Blood sugars in the 347 range inst good either. I do have that problem on rare occasion, but if your daughter is having those kinds of numbers often, then it sounds like she may need some insulin. When you said perhaps we were overreacting to your daughter being hospitalized when she had lung infections or G.I. issues, believe me you werent overreating, you were being proactive. Its what kept your daughter as well as she is today. I would encourage you to try to get your daughter to come on this site herself so she can learn more about cf and ways to treat it and how important it is to treat it.

Diane · Jan 6, 2008

Hi Christi,
Wow i dont know where to start. When you ask will she be ok afterall ,i can safely say that she will not be ok if she continues to do nothing to treat her cf. I myself was a very healthy cf'er all my younger years without any type of treatment, till it caught up to me in my late 20's early 30's. Unfortunately cf being a chronic progressive disease, means it will always be there and even with the best of care, it will progress. I was in denial about that fact for many many years. Apparently your daughter did so well all her life because she was taking proper care of herself and doing what she needed to do. Her pft's being in the low 80's sounds great to me ( mine are in the 40's) But It isnt 100% like someone else said so it does show she has some lung damage already done. I cant imagine a cf Dr. allowing / almost encouraging the cf patient to think it is ok to be lax about the whole treatment thing. Blood sugars in the 347 range inst good either. I do have that problem on rare occasion, but if your daughter is having those kinds of numbers often, then it sounds like she may need some insulin. When you said perhaps we were overreacting to your daughter being hospitalized when she had lung infections or G.I. issues, believe me you werent overreating, you were being proactive. Its what kept your daughter as well as she is today. I would encourage you to try to get your daughter to come on this site herself so she can learn more about cf and ways to treat it and how important it is to treat it.

Diane · Jan 6, 2008

Hi Christi,
Wow i dont know where to start. When you ask will she be ok afterall ,i can safely say that she will not be ok if she continues to do nothing to treat her cf. I myself was a very healthy cf'er all my younger years without any type of treatment, till it caught up to me in my late 20's early 30's. Unfortunately cf being a chronic progressive disease, means it will always be there and even with the best of care, it will progress. I was in denial about that fact for many many years. Apparently your daughter did so well all her life because she was taking proper care of herself and doing what she needed to do. Her pft's being in the low 80's sounds great to me ( mine are in the 40's) But It isnt 100% like someone else said so it does show she has some lung damage already done. I cant imagine a cf Dr. allowing / almost encouraging the cf patient to think it is ok to be lax about the whole treatment thing. Blood sugars in the 347 range inst good either. I do have that problem on rare occasion, but if your daughter is having those kinds of numbers often, then it sounds like she may need some insulin. When you said perhaps we were overreacting to your daughter being hospitalized when she had lung infections or G.I. issues, believe me you werent overreating, you were being proactive. Its what kept your daughter as well as she is today. I would encourage you to try to get your daughter to come on this site herself so she can learn more about cf and ways to treat it and how important it is to treat it.

Diane · Jan 6, 2008

Hi Christi,
Wow i dont know where to start. When you ask will she be ok afterall ,i can safely say that she will not be ok if she continues to do nothing to treat her cf. I myself was a very healthy cf'er all my younger years without any type of treatment, till it caught up to me in my late 20's early 30's. Unfortunately cf being a chronic progressive disease, means it will always be there and even with the best of care, it will progress. I was in denial about that fact for many many years. Apparently your daughter did so well all her life because she was taking proper care of herself and doing what she needed to do. Her pft's being in the low 80's sounds great to me ( mine are in the 40's) But It isnt 100% like someone else said so it does show she has some lung damage already done. I cant imagine a cf Dr. allowing / almost encouraging the cf patient to think it is ok to be lax about the whole treatment thing. Blood sugars in the 347 range inst good either. I do have that problem on rare occasion, but if your daughter is having those kinds of numbers often, then it sounds like she may need some insulin. When you said perhaps we were overreacting to your daughter being hospitalized when she had lung infections or G.I. issues, believe me you werent overreating, you were being proactive. Its what kept your daughter as well as she is today. I would encourage you to try to get your daughter to come on this site herself so she can learn more about cf and ways to treat it and how important it is to treat it.

Sevenstars · Jan 8, 2008

Yes, you should worry. You should also get a new doctor.

I'm new here... actually I joined just today after finding the place /wave but I had to reply to this topic first since it made me so angry. Neither you nor your daughter should feel BAD about taking care of her illness, and doing anything you can to prevent her from getting sicker. My very wise childhood doctor told me "I will compare your PFTs to your PFTs, not those of other patients" and it sounds like your new doctor was doing the latter.

I was in very much her same situation when I was younger. Very healthy, PFT values all over 100% predicted, weight normal, etc, yet he would still put me on meds if they dipped down below what was normal *for me*. Doing that, I stayed quite healthy through college, and only recently have been getting a lot more sick. If he would have told me "not to bother", I'm sure I would be far worse off. Like Diane said, it is a progressive disease, and it's going to get worse, and your daughter has been lucky to have been healthy so far, and that is probably in large part to you and her first doctor taking good care of her, and being proactive. Also, I have to say that the college years can be really tough for anyone, especially those with cf that now are on their own, and doing everything by themselves... this really wasn't a good time for your doctor to pipe up that she was "ok". It's actually more important now than before that she maintain a good daily routine and stay on track with things.

I don't mean to scare you or make it sound bad or anything. Your daughter sounds like she is doing great, but keeping up maintenance medicines and treatments will keep her that way for much longer than slacking off or deeming it 'not worth it' (it is!). Good luck, tell us what you decide to do. : )

Sevenstars · Jan 8, 2008

Yes, you should worry. You should also get a new doctor.

I'm new here... actually I joined just today after finding the place /wave but I had to reply to this topic first since it made me so angry. Neither you nor your daughter should feel BAD about taking care of her illness, and doing anything you can to prevent her from getting sicker. My very wise childhood doctor told me "I will compare your PFTs to your PFTs, not those of other patients" and it sounds like your new doctor was doing the latter.

I was in very much her same situation when I was younger. Very healthy, PFT values all over 100% predicted, weight normal, etc, yet he would still put me on meds if they dipped down below what was normal *for me*. Doing that, I stayed quite healthy through college, and only recently have been getting a lot more sick. If he would have told me "not to bother", I'm sure I would be far worse off. Like Diane said, it is a progressive disease, and it's going to get worse, and your daughter has been lucky to have been healthy so far, and that is probably in large part to you and her first doctor taking good care of her, and being proactive. Also, I have to say that the college years can be really tough for anyone, especially those with cf that now are on their own, and doing everything by themselves... this really wasn't a good time for your doctor to pipe up that she was "ok". It's actually more important now than before that she maintain a good daily routine and stay on track with things.

I don't mean to scare you or make it sound bad or anything. Your daughter sounds like she is doing great, but keeping up maintenance medicines and treatments will keep her that way for much longer than slacking off or deeming it 'not worth it' (it is!). Good luck, tell us what you decide to do. : )

Sevenstars · Jan 8, 2008

Yes, you should worry. You should also get a new doctor.

I'm new here... actually I joined just today after finding the place /wave but I had to reply to this topic first since it made me so angry. Neither you nor your daughter should feel BAD about taking care of her illness, and doing anything you can to prevent her from getting sicker. My very wise childhood doctor told me "I will compare your PFTs to your PFTs, not those of other patients" and it sounds like your new doctor was doing the latter.

I was in very much her same situation when I was younger. Very healthy, PFT values all over 100% predicted, weight normal, etc, yet he would still put me on meds if they dipped down below what was normal *for me*. Doing that, I stayed quite healthy through college, and only recently have been getting a lot more sick. If he would have told me "not to bother", I'm sure I would be far worse off. Like Diane said, it is a progressive disease, and it's going to get worse, and your daughter has been lucky to have been healthy so far, and that is probably in large part to you and her first doctor taking good care of her, and being proactive. Also, I have to say that the college years can be really tough for anyone, especially those with cf that now are on their own, and doing everything by themselves... this really wasn't a good time for your doctor to pipe up that she was "ok". It's actually more important now than before that she maintain a good daily routine and stay on track with things.

I don't mean to scare you or make it sound bad or anything. Your daughter sounds like she is doing great, but keeping up maintenance medicines and treatments will keep her that way for much longer than slacking off or deeming it 'not worth it' (it is!). Good luck, tell us what you decide to do. : )

Sevenstars · Jan 8, 2008

Yes, you should worry. You should also get a new doctor.

I'm new here... actually I joined just today after finding the place /wave but I had to reply to this topic first since it made me so angry. Neither you nor your daughter should feel BAD about taking care of her illness, and doing anything you can to prevent her from getting sicker. My very wise childhood doctor told me "I will compare your PFTs to your PFTs, not those of other patients" and it sounds like your new doctor was doing the latter.

I was in very much her same situation when I was younger. Very healthy, PFT values all over 100% predicted, weight normal, etc, yet he would still put me on meds if they dipped down below what was normal *for me*. Doing that, I stayed quite healthy through college, and only recently have been getting a lot more sick. If he would have told me "not to bother", I'm sure I would be far worse off. Like Diane said, it is a progressive disease, and it's going to get worse, and your daughter has been lucky to have been healthy so far, and that is probably in large part to you and her first doctor taking good care of her, and being proactive. Also, I have to say that the college years can be really tough for anyone, especially those with cf that now are on their own, and doing everything by themselves... this really wasn't a good time for your doctor to pipe up that she was "ok". It's actually more important now than before that she maintain a good daily routine and stay on track with things.

I don't mean to scare you or make it sound bad or anything. Your daughter sounds like she is doing great, but keeping up maintenance medicines and treatments will keep her that way for much longer than slacking off or deeming it 'not worth it' (it is!). Good luck, tell us what you decide to do. : )

Sevenstars · Jan 8, 2008

Yes, you should worry. You should also get a new doctor.

I'm new here... actually I joined just today after finding the place /wave but I had to reply to this topic first since it made me so angry. Neither you nor your daughter should feel BAD about taking care of her illness, and doing anything you can to prevent her from getting sicker. My very wise childhood doctor told me "I will compare your PFTs to your PFTs, not those of other patients" and it sounds like your new doctor was doing the latter.

I was in very much her same situation when I was younger. Very healthy, PFT values all over 100% predicted, weight normal, etc, yet he would still put me on meds if they dipped down below what was normal *for me*. Doing that, I stayed quite healthy through college, and only recently have been getting a lot more sick. If he would have told me "not to bother", I'm sure I would be far worse off. Like Diane said, it is a progressive disease, and it's going to get worse, and your daughter has been lucky to have been healthy so far, and that is probably in large part to you and her first doctor taking good care of her, and being proactive. Also, I have to say that the college years can be really tough for anyone, especially those with cf that now are on their own, and doing everything by themselves... this really wasn't a good time for your doctor to pipe up that she was "ok". It's actually more important now than before that she maintain a good daily routine and stay on track with things.

I don't mean to scare you or make it sound bad or anything. Your daughter sounds like she is doing great, but keeping up maintenance medicines and treatments will keep her that way for much longer than slacking off or deeming it 'not worth it' (it is!). Good luck, tell us what you decide to do. : )

LisaV · Jan 8, 2008

By any chance has your daughter just switched to an Adult CF center and is now seeing the doctor on her own without you there and without you talking to the doctor directly?

I ask because sometimes when the CFer transitions to taking full responsibility for their own care there can really be a change in regime -- at least in the beginning.
And because that transition time is really difficult for parents.

LisaV · Jan 8, 2008

By any chance has your daughter just switched to an Adult CF center and is now seeing the doctor on her own without you there and without you talking to the doctor directly?

I ask because sometimes when the CFer transitions to taking full responsibility for their own care there can really be a change in regime -- at least in the beginning.
And because that transition time is really difficult for parents.

LisaV · Jan 8, 2008

By any chance has your daughter just switched to an Adult CF center and is now seeing the doctor on her own without you there and without you talking to the doctor directly?

I ask because sometimes when the CFer transitions to taking full responsibility for their own care there can really be a change in regime -- at least in the beginning.
And because that transition time is really difficult for parents.

LisaV · Jan 8, 2008

By any chance has your daughter just switched to an Adult CF center and is now seeing the doctor on her own without you there and without you talking to the doctor directly?

I ask because sometimes when the CFer transitions to taking full responsibility for their own care there can really be a change in regime -- at least in the beginning.
And because that transition time is really difficult for parents.

LisaV · Jan 8, 2008

By any chance has your daughter just switched to an Adult CF center and is now seeing the doctor on her own without you there and without you talking to the doctor directly?

I ask because sometimes when the CFer transitions to taking full responsibility for their own care there can really be a change in regime -- at least in the beginning.
And because that transition time is really difficult for parents.

vinyrdsong · Jan 9, 2008

Thank you all so much for the wonderful responses. My daughter has transition into a new adult CF center, but she doesn't like to go by herself (mainly she fears she would "tell them off"). She is a character and gets so frustruated being told one thing at one time then told something else the next time, plus she is so tired of them looking at numbers only, not what she is concern with. Does that make sense. For example, for a few years her pfts were in the upper 90s, but she was always run down and running a low grade fever around 100 to 101 for weeks. It took about year and a different doctor to do a CT scan on her lungs to find that the middle and lower lobe of her left lung has severe bronchiectasis and pretty much gone as the doctor said. The rest of her lung looks really good, reason for good lung function, except for a few areas of mild bronchiectasis. But it explained why she wasn't feeling good since there were quite some pockets of stuff in that area and that couldn't be moved out. So she gets frustruated when the doctor looks at number, i.e., weight, pfts and then doesn't listen to her concern since they look good in her book.

The hard part that I have, but I am okay with, is letting her go as related to her treatment and taking care of herself. She is good to a point if she starts feeling really bad, but at the same time she is in major deniel that anything will get worse so right now she has a bad cold and has had it since Christmas and has not really been working on trying to get rid of it. As she told me as long as she can keep going to school and don't see the doctors she will be okay, like the doctor has told her as long as she can keep going, no worries. Yet I worry... Eeekkk

Take care all.

Christi

vinyrdsong · Jan 9, 2008

Thank you all so much for the wonderful responses. My daughter has transition into a new adult CF center, but she doesn't like to go by herself (mainly she fears she would "tell them off"). She is a character and gets so frustruated being told one thing at one time then told something else the next time, plus she is so tired of them looking at numbers only, not what she is concern with. Does that make sense. For example, for a few years her pfts were in the upper 90s, but she was always run down and running a low grade fever around 100 to 101 for weeks. It took about year and a different doctor to do a CT scan on her lungs to find that the middle and lower lobe of her left lung has severe bronchiectasis and pretty much gone as the doctor said. The rest of her lung looks really good, reason for good lung function, except for a few areas of mild bronchiectasis. But it explained why she wasn't feeling good since there were quite some pockets of stuff in that area and that couldn't be moved out. So she gets frustruated when the doctor looks at number, i.e., weight, pfts and then doesn't listen to her concern since they look good in her book.

The hard part that I have, but I am okay with, is letting her go as related to her treatment and taking care of herself. She is good to a point if she starts feeling really bad, but at the same time she is in major deniel that anything will get worse so right now she has a bad cold and has had it since Christmas and has not really been working on trying to get rid of it. As she told me as long as she can keep going to school and don't see the doctors she will be okay, like the doctor has told her as long as she can keep going, no worries. Yet I worry... Eeekkk

Take care all.

Christi

vinyrdsong · Jan 9, 2008

Thank you all so much for the wonderful responses. My daughter has transition into a new adult CF center, but she doesn't like to go by herself (mainly she fears she would "tell them off"). She is a character and gets so frustruated being told one thing at one time then told something else the next time, plus she is so tired of them looking at numbers only, not what she is concern with. Does that make sense. For example, for a few years her pfts were in the upper 90s, but she was always run down and running a low grade fever around 100 to 101 for weeks. It took about year and a different doctor to do a CT scan on her lungs to find that the middle and lower lobe of her left lung has severe bronchiectasis and pretty much gone as the doctor said. The rest of her lung looks really good, reason for good lung function, except for a few areas of mild bronchiectasis. But it explained why she wasn't feeling good since there were quite some pockets of stuff in that area and that couldn't be moved out. So she gets frustruated when the doctor looks at number, i.e., weight, pfts and then doesn't listen to her concern since they look good in her book.

The hard part that I have, but I am okay with, is letting her go as related to her treatment and taking care of herself. She is good to a point if she starts feeling really bad, but at the same time she is in major deniel that anything will get worse so right now she has a bad cold and has had it since Christmas and has not really been working on trying to get rid of it. As she told me as long as she can keep going to school and don't see the doctors she will be okay, like the doctor has told her as long as she can keep going, no worries. Yet I worry... Eeekkk

Take care all.

Christi

vinyrdsong · Jan 9, 2008

Thank you all so much for the wonderful responses. My daughter has transition into a new adult CF center, but she doesn't like to go by herself (mainly she fears she would "tell them off"). She is a character and gets so frustruated being told one thing at one time then told something else the next time, plus she is so tired of them looking at numbers only, not what she is concern with. Does that make sense. For example, for a few years her pfts were in the upper 90s, but she was always run down and running a low grade fever around 100 to 101 for weeks. It took about year and a different doctor to do a CT scan on her lungs to find that the middle and lower lobe of her left lung has severe bronchiectasis and pretty much gone as the doctor said. The rest of her lung looks really good, reason for good lung function, except for a few areas of mild bronchiectasis. But it explained why she wasn't feeling good since there were quite some pockets of stuff in that area and that couldn't be moved out. So she gets frustruated when the doctor looks at number, i.e., weight, pfts and then doesn't listen to her concern since they look good in her book.

The hard part that I have, but I am okay with, is letting her go as related to her treatment and taking care of herself. She is good to a point if she starts feeling really bad, but at the same time she is in major deniel that anything will get worse so right now she has a bad cold and has had it since Christmas and has not really been working on trying to get rid of it. As she told me as long as she can keep going to school and don't see the doctors she will be okay, like the doctor has told her as long as she can keep going, no worries. Yet I worry... Eeekkk

Take care all.

Christi

vinyrdsong · Jan 9, 2008

Thank you all so much for the wonderful responses. My daughter has transition into a new adult CF center, but she doesn't like to go by herself (mainly she fears she would "tell them off"). She is a character and gets so frustruated being told one thing at one time then told something else the next time, plus she is so tired of them looking at numbers only, not what she is concern with. Does that make sense. For example, for a few years her pfts were in the upper 90s, but she was always run down and running a low grade fever around 100 to 101 for weeks. It took about year and a different doctor to do a CT scan on her lungs to find that the middle and lower lobe of her left lung has severe bronchiectasis and pretty much gone as the doctor said. The rest of her lung looks really good, reason for good lung function, except for a few areas of mild bronchiectasis. But it explained why she wasn't feeling good since there were quite some pockets of stuff in that area and that couldn't be moved out. So she gets frustruated when the doctor looks at number, i.e., weight, pfts and then doesn't listen to her concern since they look good in her book.

The hard part that I have, but I am okay with, is letting her go as related to her treatment and taking care of herself. She is good to a point if she starts feeling really bad, but at the same time she is in major deniel that anything will get worse so right now she has a bad cold and has had it since Christmas and has not really been working on trying to get rid of it. As she told me as long as she can keep going to school and don't see the doctors she will be okay, like the doctor has told her as long as she can keep going, no worries. Yet I worry... Eeekkk

Take care all.

Christi

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