Should I be scared?

[gunelle]

Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at agd 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say. Of course my boyfriend helps me as does my mother in law, but I still have doubts. When I was diagnosed my doctor said that "this is not going to kill you". So I was at ease. I have "mild" cf. But now I read here, that CF is progressive, ok I can live with that, I have to take care, do my medicins and exercies etc. But I start to fear that I might get a turn for the worse and might need translplants and what have you (my doctor said that translants was not something necessary in my case). But... I'm still new to this, and am still confused.

A few words of wisdom pease?

Thanks <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[gunelle]

Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at agd 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say. Of course my boyfriend helps me as does my mother in law, but I still have doubts. When I was diagnosed my doctor said that "this is not going to kill you". So I was at ease. I have "mild" cf. But now I read here, that CF is progressive, ok I can live with that, I have to take care, do my medicins and exercies etc. But I start to fear that I might get a turn for the worse and might need translplants and what have you (my doctor said that translants was not something necessary in my case). But... I'm still new to this, and am still confused.

A few words of wisdom pease?

Thanks <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[gunelle]

Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at agd 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say. Of course my boyfriend helps me as does my mother in law, but I still have doubts. When I was diagnosed my doctor said that "this is not going to kill you". So I was at ease. I have "mild" cf. But now I read here, that CF is progressive, ok I can live with that, I have to take care, do my medicins and exercies etc. But I start to fear that I might get a turn for the worse and might need translplants and what have you (my doctor said that translants was not something necessary in my case). But... I'm still new to this, and am still confused.

A few words of wisdom pease?

Thanks <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[gunelle]

Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at agd 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say. Of course my boyfriend helps me as does my mother in law, but I still have doubts. When I was diagnosed my doctor said that "this is not going to kill you". So I was at ease. I have "mild" cf. But now I read here, that CF is progressive, ok I can live with that, I have to take care, do my medicins and exercies etc. But I start to fear that I might get a turn for the worse and might need translplants and what have you (my doctor said that translants was not something necessary in my case). But... I'm still new to this, and am still confused.

A few words of wisdom pease?

Thanks <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[gunelle]

Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at agd 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say. Of course my boyfriend helps me as does my mother in law, but I still have doubts. When I was diagnosed my doctor said that "this is not going to kill you". So I was at ease. I have "mild" cf. But now I read here, that CF is progressive, ok I can live with that, I have to take care, do my medicins and exercies etc. But I start to fear that I might get a turn for the worse and might need translplants and what have you (my doctor said that translants was not something necessary in my case). But... I'm still new to this, and am still confused.
<br />
<br />A few words of wisdom pease?
<br />
<br />Thanks <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[just1more]

Ok, first you need to understand that every case of CF is different. Even people with the same two muations as you (we have some on this site) will present differently.

That said, CF is progressive. What this means, is that over time the impacts of CF will slowly damage your lungs or other organs.

You might go another 20+ years before having any major issues as it is possible to be 50+ with CF. However, I won't lie to you if you reached 32 before finding out you have CF, you are now a bit behind.

One of the biggest factors in increasing the lives of people with CF is proactive treatment. This means even if you are not having issues, still taking your meds and doing breathing treatments consistently.

By doing so, you can reduce the future impact of CF; and prolong the coming declines in function.

I won't lie and things could change for you as I/we don't know anything about your current condition. However, very likely if you take care of yourself and are proactive in treating any issues there is no reason to panic and be afraid you are going to wake up anytime soon dramatically worse without warning signs.

 

[just1more]

Ok, first you need to understand that every case of CF is different. Even people with the same two muations as you (we have some on this site) will present differently.

That said, CF is progressive. What this means, is that over time the impacts of CF will slowly damage your lungs or other organs.

You might go another 20+ years before having any major issues as it is possible to be 50+ with CF. However, I won't lie to you if you reached 32 before finding out you have CF, you are now a bit behind.

One of the biggest factors in increasing the lives of people with CF is proactive treatment. This means even if you are not having issues, still taking your meds and doing breathing treatments consistently.

By doing so, you can reduce the future impact of CF; and prolong the coming declines in function.

I won't lie and things could change for you as I/we don't know anything about your current condition. However, very likely if you take care of yourself and are proactive in treating any issues there is no reason to panic and be afraid you are going to wake up anytime soon dramatically worse without warning signs.

 

[just1more]

Ok, first you need to understand that every case of CF is different. Even people with the same two muations as you (we have some on this site) will present differently.

That said, CF is progressive. What this means, is that over time the impacts of CF will slowly damage your lungs or other organs.

You might go another 20+ years before having any major issues as it is possible to be 50+ with CF. However, I won't lie to you if you reached 32 before finding out you have CF, you are now a bit behind.

One of the biggest factors in increasing the lives of people with CF is proactive treatment. This means even if you are not having issues, still taking your meds and doing breathing treatments consistently.

By doing so, you can reduce the future impact of CF; and prolong the coming declines in function.

I won't lie and things could change for you as I/we don't know anything about your current condition. However, very likely if you take care of yourself and are proactive in treating any issues there is no reason to panic and be afraid you are going to wake up anytime soon dramatically worse without warning signs.

 

[just1more]

Ok, first you need to understand that every case of CF is different. Even people with the same two muations as you (we have some on this site) will present differently.

That said, CF is progressive. What this means, is that over time the impacts of CF will slowly damage your lungs or other organs.

You might go another 20+ years before having any major issues as it is possible to be 50+ with CF. However, I won't lie to you if you reached 32 before finding out you have CF, you are now a bit behind.

One of the biggest factors in increasing the lives of people with CF is proactive treatment. This means even if you are not having issues, still taking your meds and doing breathing treatments consistently.

By doing so, you can reduce the future impact of CF; and prolong the coming declines in function.

I won't lie and things could change for you as I/we don't know anything about your current condition. However, very likely if you take care of yourself and are proactive in treating any issues there is no reason to panic and be afraid you are going to wake up anytime soon dramatically worse without warning signs.

 

[just1more]

Ok, first you need to understand that every case of CF is different. Even people with the same two muations as you (we have some on this site) will present differently.
<br />
<br />That said, CF is progressive. What this means, is that over time the impacts of CF will slowly damage your lungs or other organs.
<br />
<br />You might go another 20+ years before having any major issues as it is possible to be 50+ with CF. However, I won't lie to you if you reached 32 before finding out you have CF, you are now a bit behind.
<br />
<br />One of the biggest factors in increasing the lives of people with CF is proactive treatment. This means even if you are not having issues, still taking your meds and doing breathing treatments consistently.
<br />
<br />By doing so, you can reduce the future impact of CF; and prolong the coming declines in function.
<br />
<br />I won't lie and things could change for you as I/we don't know anything about your current condition. However, very likely if you take care of yourself and are proactive in treating any issues there is no reason to panic and be afraid you are going to wake up anytime soon dramatically worse without warning signs.
<br />
<br />

 

[gunelle]

Hi, thanks for your answer. Regarding being diagnosed at 32, might but me a back behind, I tend to disagree. My doctor said that he preferred that I was only diagnosed now, because I might have received wrong treatment. I hope he is right :/

 

[gunelle]

Hi, thanks for your answer. Regarding being diagnosed at 32, might but me a back behind, I tend to disagree. My doctor said that he preferred that I was only diagnosed now, because I might have received wrong treatment. I hope he is right :/

 

[gunelle]

Hi, thanks for your answer. Regarding being diagnosed at 32, might but me a back behind, I tend to disagree. My doctor said that he preferred that I was only diagnosed now, because I might have received wrong treatment. I hope he is right :/

 

[gunelle]

Hi, thanks for your answer. Regarding being diagnosed at 32, might but me a back behind, I tend to disagree. My doctor said that he preferred that I was only diagnosed now, because I might have received wrong treatment. I hope he is right :/

 

[gunelle]

Hi, thanks for your answer. Regarding being diagnosed at 32, might but me a back behind, I tend to disagree. My doctor said that he preferred that I was only diagnosed now, because I might have received wrong treatment. I hope he is right :/

 

[LouLou]

I don't believe anything an accredited cf doctor would do for a cf patient would ever hurt a person who has cf. This is because treatment is only given based on symptoms shown except for a few things that are done in a preventative measure which are quite benign like albuterol, vitamins an the vest.

For example, you never would have been given very agressive IV antibiotics if you didn't present with a lung infection that wasn't treatable with an oral antiobitic with less side effects. Also you wouldn't have been put on enzymes if you weren't showing signs of PI. So I don't buy into the reasoning that a late diagnosis may have saved you from treatment that may have hurt you. Although if you very mild to no symptoms I don't see a reason that an early diagnosis would have helped so I wouldn't fret.

You make absolutely no mention of any of your cf symptoms in your post so we can't say whether or not your doctor is correct to have this hands off approach with your care.

I would get a second opinion if I were you. In the meantime you could post a message to Steve in the Ambry post in the Families section to find out what the typical progression is with someone with your gene combo. As Tom said, and Steve will reiterate, genetic mutations don't dictate outcome though. They can only be used as a guideline.

 

[LouLou]

I don't believe anything an accredited cf doctor would do for a cf patient would ever hurt a person who has cf. This is because treatment is only given based on symptoms shown except for a few things that are done in a preventative measure which are quite benign like albuterol, vitamins an the vest.

For example, you never would have been given very agressive IV antibiotics if you didn't present with a lung infection that wasn't treatable with an oral antiobitic with less side effects. Also you wouldn't have been put on enzymes if you weren't showing signs of PI. So I don't buy into the reasoning that a late diagnosis may have saved you from treatment that may have hurt you. Although if you very mild to no symptoms I don't see a reason that an early diagnosis would have helped so I wouldn't fret.

You make absolutely no mention of any of your cf symptoms in your post so we can't say whether or not your doctor is correct to have this hands off approach with your care.

I would get a second opinion if I were you. In the meantime you could post a message to Steve in the Ambry post in the Families section to find out what the typical progression is with someone with your gene combo. As Tom said, and Steve will reiterate, genetic mutations don't dictate outcome though. They can only be used as a guideline.

 

[LouLou]

I don't believe anything an accredited cf doctor would do for a cf patient would ever hurt a person who has cf. This is because treatment is only given based on symptoms shown except for a few things that are done in a preventative measure which are quite benign like albuterol, vitamins an the vest.

For example, you never would have been given very agressive IV antibiotics if you didn't present with a lung infection that wasn't treatable with an oral antiobitic with less side effects. Also you wouldn't have been put on enzymes if you weren't showing signs of PI. So I don't buy into the reasoning that a late diagnosis may have saved you from treatment that may have hurt you. Although if you very mild to no symptoms I don't see a reason that an early diagnosis would have helped so I wouldn't fret.

You make absolutely no mention of any of your cf symptoms in your post so we can't say whether or not your doctor is correct to have this hands off approach with your care.

I would get a second opinion if I were you. In the meantime you could post a message to Steve in the Ambry post in the Families section to find out what the typical progression is with someone with your gene combo. As Tom said, and Steve will reiterate, genetic mutations don't dictate outcome though. They can only be used as a guideline.

 

[LouLou]

I don't believe anything an accredited cf doctor would do for a cf patient would ever hurt a person who has cf. This is because treatment is only given based on symptoms shown except for a few things that are done in a preventative measure which are quite benign like albuterol, vitamins an the vest.

For example, you never would have been given very agressive IV antibiotics if you didn't present with a lung infection that wasn't treatable with an oral antiobitic with less side effects. Also you wouldn't have been put on enzymes if you weren't showing signs of PI. So I don't buy into the reasoning that a late diagnosis may have saved you from treatment that may have hurt you. Although if you very mild to no symptoms I don't see a reason that an early diagnosis would have helped so I wouldn't fret.

You make absolutely no mention of any of your cf symptoms in your post so we can't say whether or not your doctor is correct to have this hands off approach with your care.

I would get a second opinion if I were you. In the meantime you could post a message to Steve in the Ambry post in the Families section to find out what the typical progression is with someone with your gene combo. As Tom said, and Steve will reiterate, genetic mutations don't dictate outcome though. They can only be used as a guideline.

 

[LouLou]

I don't believe anything an accredited cf doctor would do for a cf patient would ever hurt a person who has cf. This is because treatment is only given based on symptoms shown except for a few things that are done in a preventative measure which are quite benign like albuterol, vitamins an the vest.
<br />
<br />For example, you never would have been given very agressive IV antibiotics if you didn't present with a lung infection that wasn't treatable with an oral antiobitic with less side effects. Also you wouldn't have been put on enzymes if you weren't showing signs of PI. So I don't buy into the reasoning that a late diagnosis may have saved you from treatment that may have hurt you. Although if you very mild to no symptoms I don't see a reason that an early diagnosis would have helped so I wouldn't fret.
<br />
<br />You make absolutely no mention of any of your cf symptoms in your post so we can't say whether or not your doctor is correct to have this hands off approach with your care.
<br />
<br />I would get a second opinion if I were you. In the meantime you could post a message to Steve in the Ambry post in the Families section to find out what the typical progression is with someone with your gene combo. As Tom said, and Steve will reiterate, genetic mutations don't dictate outcome though. They can only be used as a guideline.