Mild CF?

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flatfordl

New member
We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never see any mucus or damage. (Yes our clinic does yearly bronchs, please don't comment on your opinion about this)

Early on in her diagnoses they wouldn't even discuss her possibly having a mild case. Today however we asked again and the doc actually said yes it is possible her CF will stay mild. I guess he changed his mind due to the last 3 years of no respiratory symptoms. Of course he then followed with the fact that respiratory symptoms do get worse or sometimes just begin in adolescence which she is only 5, so not to get our hopes up.

My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.

FYI: No matter what we plan to continue treating her as if she has normal CF. She does the Vest twice a day, Pulmozyme, Albuterol, and Hypertonic Saline.
 
F

flatfordl

New member
We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never see any mucus or damage. (Yes our clinic does yearly bronchs, please don't comment on your opinion about this)

Early on in her diagnoses they wouldn't even discuss her possibly having a mild case. Today however we asked again and the doc actually said yes it is possible her CF will stay mild. I guess he changed his mind due to the last 3 years of no respiratory symptoms. Of course he then followed with the fact that respiratory symptoms do get worse or sometimes just begin in adolescence which she is only 5, so not to get our hopes up.

My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.

FYI: No matter what we plan to continue treating her as if she has normal CF. She does the Vest twice a day, Pulmozyme, Albuterol, and Hypertonic Saline.
 
F

flatfordl

New member
We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never see any mucus or damage. (Yes our clinic does yearly bronchs, please don't comment on your opinion about this)

Early on in her diagnoses they wouldn't even discuss her possibly having a mild case. Today however we asked again and the doc actually said yes it is possible her CF will stay mild. I guess he changed his mind due to the last 3 years of no respiratory symptoms. Of course he then followed with the fact that respiratory symptoms do get worse or sometimes just begin in adolescence which she is only 5, so not to get our hopes up.

My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.

FYI: No matter what we plan to continue treating her as if she has normal CF. She does the Vest twice a day, Pulmozyme, Albuterol, and Hypertonic Saline.
 
F

flatfordl

New member
We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never see any mucus or damage. (Yes our clinic does yearly bronchs, please don't comment on your opinion about this)

Early on in her diagnoses they wouldn't even discuss her possibly having a mild case. Today however we asked again and the doc actually said yes it is possible her CF will stay mild. I guess he changed his mind due to the last 3 years of no respiratory symptoms. Of course he then followed with the fact that respiratory symptoms do get worse or sometimes just begin in adolescence which she is only 5, so not to get our hopes up.

My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.

FYI: No matter what we plan to continue treating her as if she has normal CF. She does the Vest twice a day, Pulmozyme, Albuterol, and Hypertonic Saline.
 
F

flatfordl

New member
We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never see any mucus or damage. (Yes our clinic does yearly bronchs, please don't comment on your opinion about this)
<br />
<br />Early on in her diagnoses they wouldn't even discuss her possibly having a mild case. Today however we asked again and the doc actually said yes it is possible her CF will stay mild. I guess he changed his mind due to the last 3 years of no respiratory symptoms. Of course he then followed with the fact that respiratory symptoms do get worse or sometimes just begin in adolescence which she is only 5, so not to get our hopes up.
<br />
<br />My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
<br />
<br />FYI: No matter what we plan to continue treating her as if she has normal CF. She does the Vest twice a day, Pulmozyme, Albuterol, and Hypertonic Saline.
 
W

welshwitch

Guest
Hi flatfordl,

Mr doctors have told me that I have mild CF. I take this with a grain of salt (pun intended!) of course. This is a hotly debated issue on this forum. Some people say "There is no such things as mild CF, CF is CF." However, others think that modifier genes, and basic luck play into CF manifesting itself in a milder way.

I try to stay on top of my health because I never know when it will go away. That said, I seem to be doing really well for someone w. CF. My PFTs are around 115 %. I have never been hospitalized and haven't gotten IVs yet. (Yet. I try not to sugarcoat things for myself). Oh yeah, I just turned 29.

I asked my doctor specific questions about my survival prognosis. He was able to explain to me that SO FAR my numbers look great and that, if I continue to stay in this bracket, I should "not have a reduced lifespan."

Hearing that was like winning the lottery. However, the next day I came to my senses. To me it really is impossible to predict what will happen. I try to be realistic and be really proactive with my health regimen. On the other hand, having my doctor say that my CF is mild and that I will live a long time was really great to hear.
 
W

welshwitch

Guest
Hi flatfordl,

Mr doctors have told me that I have mild CF. I take this with a grain of salt (pun intended!) of course. This is a hotly debated issue on this forum. Some people say "There is no such things as mild CF, CF is CF." However, others think that modifier genes, and basic luck play into CF manifesting itself in a milder way.

I try to stay on top of my health because I never know when it will go away. That said, I seem to be doing really well for someone w. CF. My PFTs are around 115 %. I have never been hospitalized and haven't gotten IVs yet. (Yet. I try not to sugarcoat things for myself). Oh yeah, I just turned 29.

I asked my doctor specific questions about my survival prognosis. He was able to explain to me that SO FAR my numbers look great and that, if I continue to stay in this bracket, I should "not have a reduced lifespan."

Hearing that was like winning the lottery. However, the next day I came to my senses. To me it really is impossible to predict what will happen. I try to be realistic and be really proactive with my health regimen. On the other hand, having my doctor say that my CF is mild and that I will live a long time was really great to hear.
 
W

welshwitch

Guest
Hi flatfordl,

Mr doctors have told me that I have mild CF. I take this with a grain of salt (pun intended!) of course. This is a hotly debated issue on this forum. Some people say "There is no such things as mild CF, CF is CF." However, others think that modifier genes, and basic luck play into CF manifesting itself in a milder way.

I try to stay on top of my health because I never know when it will go away. That said, I seem to be doing really well for someone w. CF. My PFTs are around 115 %. I have never been hospitalized and haven't gotten IVs yet. (Yet. I try not to sugarcoat things for myself). Oh yeah, I just turned 29.

I asked my doctor specific questions about my survival prognosis. He was able to explain to me that SO FAR my numbers look great and that, if I continue to stay in this bracket, I should "not have a reduced lifespan."

Hearing that was like winning the lottery. However, the next day I came to my senses. To me it really is impossible to predict what will happen. I try to be realistic and be really proactive with my health regimen. On the other hand, having my doctor say that my CF is mild and that I will live a long time was really great to hear.
 
W

welshwitch

Guest
Hi flatfordl,

Mr doctors have told me that I have mild CF. I take this with a grain of salt (pun intended!) of course. This is a hotly debated issue on this forum. Some people say "There is no such things as mild CF, CF is CF." However, others think that modifier genes, and basic luck play into CF manifesting itself in a milder way.

I try to stay on top of my health because I never know when it will go away. That said, I seem to be doing really well for someone w. CF. My PFTs are around 115 %. I have never been hospitalized and haven't gotten IVs yet. (Yet. I try not to sugarcoat things for myself). Oh yeah, I just turned 29.

I asked my doctor specific questions about my survival prognosis. He was able to explain to me that SO FAR my numbers look great and that, if I continue to stay in this bracket, I should "not have a reduced lifespan."

Hearing that was like winning the lottery. However, the next day I came to my senses. To me it really is impossible to predict what will happen. I try to be realistic and be really proactive with my health regimen. On the other hand, having my doctor say that my CF is mild and that I will live a long time was really great to hear.
 
W

welshwitch

Guest
Hi flatfordl,
<br />
<br />Mr doctors have told me that I have mild CF. I take this with a grain of salt (pun intended!) of course. This is a hotly debated issue on this forum. Some people say "There is no such things as mild CF, CF is CF." However, others think that modifier genes, and basic luck play into CF manifesting itself in a milder way.
<br />
<br />I try to stay on top of my health because I never know when it will go away. That said, I seem to be doing really well for someone w. CF. My PFTs are around 115 %. I have never been hospitalized and haven't gotten IVs yet. (Yet. I try not to sugarcoat things for myself). Oh yeah, I just turned 29.
<br />
<br />I asked my doctor specific questions about my survival prognosis. He was able to explain to me that SO FAR my numbers look great and that, if I continue to stay in this bracket, I should "not have a reduced lifespan."
<br />
<br />Hearing that was like winning the lottery. However, the next day I came to my senses. To me it really is impossible to predict what will happen. I try to be realistic and be really proactive with my health regimen. On the other hand, having my doctor say that my CF is mild and that I will live a long time was really great to hear.
 
K

kfw1963

Guest
Lynsey, I wouldn't say that you can have mild, moderate or severe CF but different aspects of the disease manifest themselves at different times. In my case my lung function was never an issue until I turned 18 but I was pancreatic insufficient from the get go and always required enzymes. I have to say if you have CF you have it and it is just a matter of what you are dealing with at that particular time as to how "severe" you, or the doctors, would consider the situation.
 
K

kfw1963

Guest
Lynsey, I wouldn't say that you can have mild, moderate or severe CF but different aspects of the disease manifest themselves at different times. In my case my lung function was never an issue until I turned 18 but I was pancreatic insufficient from the get go and always required enzymes. I have to say if you have CF you have it and it is just a matter of what you are dealing with at that particular time as to how "severe" you, or the doctors, would consider the situation.
 
K

kfw1963

Guest
Lynsey, I wouldn't say that you can have mild, moderate or severe CF but different aspects of the disease manifest themselves at different times. In my case my lung function was never an issue until I turned 18 but I was pancreatic insufficient from the get go and always required enzymes. I have to say if you have CF you have it and it is just a matter of what you are dealing with at that particular time as to how "severe" you, or the doctors, would consider the situation.
 
K

kfw1963

Guest
Lynsey, I wouldn't say that you can have mild, moderate or severe CF but different aspects of the disease manifest themselves at different times. In my case my lung function was never an issue until I turned 18 but I was pancreatic insufficient from the get go and always required enzymes. I have to say if you have CF you have it and it is just a matter of what you are dealing with at that particular time as to how "severe" you, or the doctors, would consider the situation.
 
K

kfw1963

Guest
Lynsey, I wouldn't say that you can have mild, moderate or severe CF but different aspects of the disease manifest themselves at different times. In my case my lung function was never an issue until I turned 18 but I was pancreatic insufficient from the get go and always required enzymes. I have to say if you have CF you have it and it is just a matter of what you are dealing with at that particular time as to how "severe" you, or the doctors, would consider the situation.
 
G

grassisgreener

New member
My daughters doctor has called her mild and once a-typical. I never ask about it but that is what they say bc she has had no lung involvement and also she does have a DF508 but her 2nd mutation is much further down the CFTR protein which allows for more function. I know she has CF, her sinuses are the main indicator right now and I pray it stays that way but only time will tell. We live our lives based on how we are all doing today and try to have as much fun as we can!
 
G

grassisgreener

New member
My daughters doctor has called her mild and once a-typical. I never ask about it but that is what they say bc she has had no lung involvement and also she does have a DF508 but her 2nd mutation is much further down the CFTR protein which allows for more function. I know she has CF, her sinuses are the main indicator right now and I pray it stays that way but only time will tell. We live our lives based on how we are all doing today and try to have as much fun as we can!
 
G

grassisgreener

New member
My daughters doctor has called her mild and once a-typical. I never ask about it but that is what they say bc she has had no lung involvement and also she does have a DF508 but her 2nd mutation is much further down the CFTR protein which allows for more function. I know she has CF, her sinuses are the main indicator right now and I pray it stays that way but only time will tell. We live our lives based on how we are all doing today and try to have as much fun as we can!
 
G

grassisgreener

New member
My daughters doctor has called her mild and once a-typical. I never ask about it but that is what they say bc she has had no lung involvement and also she does have a DF508 but her 2nd mutation is much further down the CFTR protein which allows for more function. I know she has CF, her sinuses are the main indicator right now and I pray it stays that way but only time will tell. We live our lives based on how we are all doing today and try to have as much fun as we can!
 
G

grassisgreener

New member
My daughters doctor has called her mild and once a-typical. I never ask about it but that is what they say bc she has had no lung involvement and also she does have a DF508 but her 2nd mutation is much further down the CFTR protein which allows for more function. I know she has CF, her sinuses are the main indicator right now and I pray it stays that way but only time will tell. We live our lives based on how we are all doing today and try to have as much fun as we can!
 
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