Questions about adult diagnosis

Aspiemom · Jul 11, 2008

Welcome to our site, altho I'm sorry you've needed to come here.

As you can see from my signature, I was diagnosed when I was 43, through a genetics test at Johns Hopkins. I have a CF gene and a mutated gene, also. I had a chronic cough since childhood that no one could ever "get to the bottom of" and chronic sinus issues that got worse the older I got, so we have some similar background.

There is a great book that CF Centers are SUPPOSED to give out for free to their patients, so WHEN (and I agree that you definitely need to get an appt there) you go to your new CF center make sure you ask for it if they don't mention it. It's very easy to read and informative.

"Now That I Have CF" Information for Men and Women Diagnosed as Adults (It is compliments of Solvay Pharmaceuticals)

Reading this book was like reading about myself. My parents read it, also, and thought the same thing.

Aspiemom · Jul 11, 2008

Welcome to our site, altho I'm sorry you've needed to come here.

As you can see from my signature, I was diagnosed when I was 43, through a genetics test at Johns Hopkins. I have a CF gene and a mutated gene, also. I had a chronic cough since childhood that no one could ever "get to the bottom of" and chronic sinus issues that got worse the older I got, so we have some similar background.

There is a great book that CF Centers are SUPPOSED to give out for free to their patients, so WHEN (and I agree that you definitely need to get an appt there) you go to your new CF center make sure you ask for it if they don't mention it. It's very easy to read and informative.

"Now That I Have CF" Information for Men and Women Diagnosed as Adults (It is compliments of Solvay Pharmaceuticals)

Reading this book was like reading about myself. My parents read it, also, and thought the same thing.

Aspiemom · Jul 11, 2008

Welcome to our site, altho I'm sorry you've needed to come here.

As you can see from my signature, I was diagnosed when I was 43, through a genetics test at Johns Hopkins. I have a CF gene and a mutated gene, also. I had a chronic cough since childhood that no one could ever "get to the bottom of" and chronic sinus issues that got worse the older I got, so we have some similar background.

There is a great book that CF Centers are SUPPOSED to give out for free to their patients, so WHEN (and I agree that you definitely need to get an appt there) you go to your new CF center make sure you ask for it if they don't mention it. It's very easy to read and informative.

"Now That I Have CF" Information for Men and Women Diagnosed as Adults (It is compliments of Solvay Pharmaceuticals)

Reading this book was like reading about myself. My parents read it, also, and thought the same thing.

Aspiemom · Jul 11, 2008

Welcome to our site, altho I'm sorry you've needed to come here.

As you can see from my signature, I was diagnosed when I was 43, through a genetics test at Johns Hopkins. I have a CF gene and a mutated gene, also. I had a chronic cough since childhood that no one could ever "get to the bottom of" and chronic sinus issues that got worse the older I got, so we have some similar background.

There is a great book that CF Centers are SUPPOSED to give out for free to their patients, so WHEN (and I agree that you definitely need to get an appt there) you go to your new CF center make sure you ask for it if they don't mention it. It's very easy to read and informative.

"Now That I Have CF" Information for Men and Women Diagnosed as Adults (It is compliments of Solvay Pharmaceuticals)

Reading this book was like reading about myself. My parents read it, also, and thought the same thing.

Aspiemom · Jul 11, 2008

Welcome to our site, altho I'm sorry you've needed to come here.
 
 As you can see from my signature, I was diagnosed when I was 43, through a genetics test at Johns Hopkins. I have a CF gene and a mutated gene, also. I had a chronic cough since childhood that no one could ever "get to the bottom of" and chronic sinus issues that got worse the older I got, so we have some similar background.
 
 There is a great book that CF Centers are SUPPOSED to give out for free to their patients, so WHEN (and I agree that you definitely need to get an appt there) you go to your new CF center make sure you ask for it if they don't mention it. It's very easy to read and informative.
 
 "Now That I Have CF" Information for Men and Women Diagnosed as Adults (It is compliments of Solvay Pharmaceuticals)
 
 Reading this book was like reading about myself. My parents read it, also, and thought the same thing.

smccanl · Jul 12, 2008

Thanks again for all the replies. I am so confused about the genetics - and I'm sure I wouldn't be bugging you all if my allergist had given me more information before skipping town. I'm going to try to get a copy of the labs from the office.

I looked up my initial screening test and that found a G551D mutation. Then the allergist tells me there is also another mutation.

But now I am reading on some past messages that some people say they have 2 mutations but not CF? Is that possible?

Debbi, you say you have 1 CF gene and one mutated gene. Can you explain what that means? I thought a CF gene WAS a mutated gene... obviously I need to do some reading.

If I have some symptoms and two mutations, is that automatically CF? Looking through the archives I'm getting even more confused. I know I will learn this stuff in time but I want to know NOW <img src="i/expressions/face-icon-small-wink.gif" border="0">

Thanks again,
Sarah

smccanl · Jul 12, 2008

Thanks again for all the replies. I am so confused about the genetics - and I'm sure I wouldn't be bugging you all if my allergist had given me more information before skipping town. I'm going to try to get a copy of the labs from the office.

I looked up my initial screening test and that found a G551D mutation. Then the allergist tells me there is also another mutation.

But now I am reading on some past messages that some people say they have 2 mutations but not CF? Is that possible?

Debbi, you say you have 1 CF gene and one mutated gene. Can you explain what that means? I thought a CF gene WAS a mutated gene... obviously I need to do some reading.

If I have some symptoms and two mutations, is that automatically CF? Looking through the archives I'm getting even more confused. I know I will learn this stuff in time but I want to know NOW <img src="i/expressions/face-icon-small-wink.gif" border="0">

Thanks again,
Sarah

smccanl · Jul 12, 2008

Thanks again for all the replies. I am so confused about the genetics - and I'm sure I wouldn't be bugging you all if my allergist had given me more information before skipping town. I'm going to try to get a copy of the labs from the office.

I looked up my initial screening test and that found a G551D mutation. Then the allergist tells me there is also another mutation.

But now I am reading on some past messages that some people say they have 2 mutations but not CF? Is that possible?

Debbi, you say you have 1 CF gene and one mutated gene. Can you explain what that means? I thought a CF gene WAS a mutated gene... obviously I need to do some reading.

If I have some symptoms and two mutations, is that automatically CF? Looking through the archives I'm getting even more confused. I know I will learn this stuff in time but I want to know NOW <img src="i/expressions/face-icon-small-wink.gif" border="0">

Thanks again,
Sarah

smccanl · Jul 12, 2008

Thanks again for all the replies. I am so confused about the genetics - and I'm sure I wouldn't be bugging you all if my allergist had given me more information before skipping town. I'm going to try to get a copy of the labs from the office.

I looked up my initial screening test and that found a G551D mutation. Then the allergist tells me there is also another mutation.

But now I am reading on some past messages that some people say they have 2 mutations but not CF? Is that possible?

Debbi, you say you have 1 CF gene and one mutated gene. Can you explain what that means? I thought a CF gene WAS a mutated gene... obviously I need to do some reading.

If I have some symptoms and two mutations, is that automatically CF? Looking through the archives I'm getting even more confused. I know I will learn this stuff in time but I want to know NOW <img src="i/expressions/face-icon-small-wink.gif" border="0">

Thanks again,
Sarah

smccanl · Jul 12, 2008

Thanks again for all the replies. I am so confused about the genetics - and I'm sure I wouldn't be bugging you all if my allergist had given me more information before skipping town. I'm going to try to get a copy of the labs from the office.
 
 I looked up my initial screening test and that found a G551D mutation. Then the allergist tells me there is also another mutation.
 
 But now I am reading on some past messages that some people say they have 2 mutations but not CF? Is that possible?
 
 Debbi, you say you have 1 CF gene and one mutated gene. Can you explain what that means? I thought a CF gene WAS a mutated gene... obviously I need to do some reading.
 
 If I have some symptoms and two mutations, is that automatically CF? Looking through the archives I'm getting even more confused. I know I will learn this stuff in time but I want to know NOW <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 Thanks again,
 Sarah

Sevenstars · Jul 12, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: smccanl

If I have some symptoms and two mutations, is that automatically CF?
</end quote></div>

Yes.

Some people, in recent years, seem to be of the opinion that mild cases imply it's "atypical CF" or "variant CF" or whatever they want to call it. There might be some argument for that in very odd cases with strange genetics, but the general rule is if you have 2 genes for CF, you have it. In your case it appears to be very clear cut - you have two genes, so you have it. (from what you have told us) To avoid confusion you might want to stay away from any thread that talks about atypical CF for now. <img src="i/expressions/face-icon-small-wink.gif" border="0">

The actual expression of that gene (how sick you are) varies a whole lot. ie. Two people with the same CF genes can have different problems. One might have severe lung problems, and the other one mild lung problems, for example.

I am actually thankful that CF has such a definitive test now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Years ago we had to use a sweat test to diagnose, which had many false negatives (people DID have CF, but the test said they did not). Also many other diseases have no simple blood test for a definitive diagnosis.

I found an article a while back that explains the whole "atypical" genes thing perfectly. I just can't find it again!!

Think of the genes that cause CF as if they were a car. A normal person's genes are a nice shiny car; it can drive you anywhere, it does it's job, it works fine.

A person with CF has a car that has no wheels and no engine. It's dead, it can't even move anywhere. The genes simply don't function properly AT ALL.

SOME people, have genes that are somewhere inbetween. Their genes are like a car with a flat. The engine works, the other wheels work, and maybe the road is a little bumpy... but you can at least drive a little bit. I think this is what Diane was referring to when she said she has one "mutated" gene. She has one CF car gene and one flat-tire car gene.

Anyway, these "cars" do not correspond to how we feel. They are purely on the genetic level. For example, I have two CF cars - completely broken, yet, my lungs aren't *that bad*. The vast majority of us here have 2 completely broken genes, yet we have a huge huge range of health. Some of us work full time, and have 100% lung function. Someone with the very same genes might have 20% lung function.

The error, and the confusion, is when someone tries to call their 2 broken cars (genes) "atypical" simply because they seem to be healthy so far. This REALLY makes it confusing for new people coming to the site, like you, and is a bit misleading. The term "atypical" should really only be applied to someone's genetic makeup, not simply their current health.

Just because you are healthy now does not mean you cannot be helped immensely from treatment. Since CF is progressive, it's imperative to maintain your health as much as possible.

Anyway I'm really rambling and probably confused you more. I hope I didn't, though. <img src="i/expressions/face-icon-small-blush.gif" border="0">

Sevenstars · Jul 12, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: smccanl

If I have some symptoms and two mutations, is that automatically CF?
</end quote></div>

Yes.

Some people, in recent years, seem to be of the opinion that mild cases imply it's "atypical CF" or "variant CF" or whatever they want to call it. There might be some argument for that in very odd cases with strange genetics, but the general rule is if you have 2 genes for CF, you have it. In your case it appears to be very clear cut - you have two genes, so you have it. (from what you have told us) To avoid confusion you might want to stay away from any thread that talks about atypical CF for now. <img src="i/expressions/face-icon-small-wink.gif" border="0">

The actual expression of that gene (how sick you are) varies a whole lot. ie. Two people with the same CF genes can have different problems. One might have severe lung problems, and the other one mild lung problems, for example.

I am actually thankful that CF has such a definitive test now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Years ago we had to use a sweat test to diagnose, which had many false negatives (people DID have CF, but the test said they did not). Also many other diseases have no simple blood test for a definitive diagnosis.

I found an article a while back that explains the whole "atypical" genes thing perfectly. I just can't find it again!!

Think of the genes that cause CF as if they were a car. A normal person's genes are a nice shiny car; it can drive you anywhere, it does it's job, it works fine.

A person with CF has a car that has no wheels and no engine. It's dead, it can't even move anywhere. The genes simply don't function properly AT ALL.

SOME people, have genes that are somewhere inbetween. Their genes are like a car with a flat. The engine works, the other wheels work, and maybe the road is a little bumpy... but you can at least drive a little bit. I think this is what Diane was referring to when she said she has one "mutated" gene. She has one CF car gene and one flat-tire car gene.

Anyway, these "cars" do not correspond to how we feel. They are purely on the genetic level. For example, I have two CF cars - completely broken, yet, my lungs aren't *that bad*. The vast majority of us here have 2 completely broken genes, yet we have a huge huge range of health. Some of us work full time, and have 100% lung function. Someone with the very same genes might have 20% lung function.

The error, and the confusion, is when someone tries to call their 2 broken cars (genes) "atypical" simply because they seem to be healthy so far. This REALLY makes it confusing for new people coming to the site, like you, and is a bit misleading. The term "atypical" should really only be applied to someone's genetic makeup, not simply their current health.

Just because you are healthy now does not mean you cannot be helped immensely from treatment. Since CF is progressive, it's imperative to maintain your health as much as possible.

Anyway I'm really rambling and probably confused you more. I hope I didn't, though. <img src="i/expressions/face-icon-small-blush.gif" border="0">

Sevenstars · Jul 12, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: smccanl

If I have some symptoms and two mutations, is that automatically CF?
</end quote></div>

Yes.

Some people, in recent years, seem to be of the opinion that mild cases imply it's "atypical CF" or "variant CF" or whatever they want to call it. There might be some argument for that in very odd cases with strange genetics, but the general rule is if you have 2 genes for CF, you have it. In your case it appears to be very clear cut - you have two genes, so you have it. (from what you have told us) To avoid confusion you might want to stay away from any thread that talks about atypical CF for now. <img src="i/expressions/face-icon-small-wink.gif" border="0">

The actual expression of that gene (how sick you are) varies a whole lot. ie. Two people with the same CF genes can have different problems. One might have severe lung problems, and the other one mild lung problems, for example.

I am actually thankful that CF has such a definitive test now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Years ago we had to use a sweat test to diagnose, which had many false negatives (people DID have CF, but the test said they did not). Also many other diseases have no simple blood test for a definitive diagnosis.

I found an article a while back that explains the whole "atypical" genes thing perfectly. I just can't find it again!!

Think of the genes that cause CF as if they were a car. A normal person's genes are a nice shiny car; it can drive you anywhere, it does it's job, it works fine.

A person with CF has a car that has no wheels and no engine. It's dead, it can't even move anywhere. The genes simply don't function properly AT ALL.

SOME people, have genes that are somewhere inbetween. Their genes are like a car with a flat. The engine works, the other wheels work, and maybe the road is a little bumpy... but you can at least drive a little bit. I think this is what Diane was referring to when she said she has one "mutated" gene. She has one CF car gene and one flat-tire car gene.

Anyway, these "cars" do not correspond to how we feel. They are purely on the genetic level. For example, I have two CF cars - completely broken, yet, my lungs aren't *that bad*. The vast majority of us here have 2 completely broken genes, yet we have a huge huge range of health. Some of us work full time, and have 100% lung function. Someone with the very same genes might have 20% lung function.

The error, and the confusion, is when someone tries to call their 2 broken cars (genes) "atypical" simply because they seem to be healthy so far. This REALLY makes it confusing for new people coming to the site, like you, and is a bit misleading. The term "atypical" should really only be applied to someone's genetic makeup, not simply their current health.

Just because you are healthy now does not mean you cannot be helped immensely from treatment. Since CF is progressive, it's imperative to maintain your health as much as possible.

Anyway I'm really rambling and probably confused you more. I hope I didn't, though. <img src="i/expressions/face-icon-small-blush.gif" border="0">

Sevenstars · Jul 12, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: smccanl

If I have some symptoms and two mutations, is that automatically CF?
</end quote>

Yes.

Some people, in recent years, seem to be of the opinion that mild cases imply it's "atypical CF" or "variant CF" or whatever they want to call it. There might be some argument for that in very odd cases with strange genetics, but the general rule is if you have 2 genes for CF, you have it. In your case it appears to be very clear cut - you have two genes, so you have it. (from what you have told us) To avoid confusion you might want to stay away from any thread that talks about atypical CF for now. <img src="i/expressions/face-icon-small-wink.gif" border="0">

The actual expression of that gene (how sick you are) varies a whole lot. ie. Two people with the same CF genes can have different problems. One might have severe lung problems, and the other one mild lung problems, for example.

I am actually thankful that CF has such a definitive test now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Years ago we had to use a sweat test to diagnose, which had many false negatives (people DID have CF, but the test said they did not). Also many other diseases have no simple blood test for a definitive diagnosis.

I found an article a while back that explains the whole "atypical" genes thing perfectly. I just can't find it again!!

Think of the genes that cause CF as if they were a car. A normal person's genes are a nice shiny car; it can drive you anywhere, it does it's job, it works fine.

A person with CF has a car that has no wheels and no engine. It's dead, it can't even move anywhere. The genes simply don't function properly AT ALL.

SOME people, have genes that are somewhere inbetween. Their genes are like a car with a flat. The engine works, the other wheels work, and maybe the road is a little bumpy... but you can at least drive a little bit. I think this is what Diane was referring to when she said she has one "mutated" gene. She has one CF car gene and one flat-tire car gene.

Anyway, these "cars" do not correspond to how we feel. They are purely on the genetic level. For example, I have two CF cars - completely broken, yet, my lungs aren't *that bad*. The vast majority of us here have 2 completely broken genes, yet we have a huge huge range of health. Some of us work full time, and have 100% lung function. Someone with the very same genes might have 20% lung function.

The error, and the confusion, is when someone tries to call their 2 broken cars (genes) "atypical" simply because they seem to be healthy so far. This REALLY makes it confusing for new people coming to the site, like you, and is a bit misleading. The term "atypical" should really only be applied to someone's genetic makeup, not simply their current health.

Just because you are healthy now does not mean you cannot be helped immensely from treatment. Since CF is progressive, it's imperative to maintain your health as much as possible.

Anyway I'm really rambling and probably confused you more. I hope I didn't, though. <img src="i/expressions/face-icon-small-blush.gif" border="0">

Sevenstars · Jul 12, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: smccanl
 
 If I have some symptoms and two mutations, is that automatically CF?
 </end quote>
 
 Yes.
 
 Some people, in recent years, seem to be of the opinion that mild cases imply it's "atypical CF" or "variant CF" or whatever they want to call it. There might be some argument for that in very odd cases with strange genetics, but the general rule is if you have 2 genes for CF, you have it. In your case it appears to be very clear cut - you have two genes, so you have it. (from what you have told us) To avoid confusion you might want to stay away from any thread that talks about atypical CF for now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 The actual expression of that gene (how sick you are) varies a whole lot. ie. Two people with the same CF genes can have different problems. One might have severe lung problems, and the other one mild lung problems, for example.
 
 I am actually thankful that CF has such a definitive test now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Years ago we had to use a sweat test to diagnose, which had many false negatives (people DID have CF, but the test said they did not). Also many other diseases have no simple blood test for a definitive diagnosis.
 
 I found an article a while back that explains the whole "atypical" genes thing perfectly. I just can't find it again!!
 
 Think of the genes that cause CF as if they were a car. A normal person's genes are a nice shiny car; it can drive you anywhere, it does it's job, it works fine.
 
 A person with CF has a car that has no wheels and no engine. It's dead, it can't even move anywhere. The genes simply don't function properly AT ALL.
 
 SOME people, have genes that are somewhere inbetween. Their genes are like a car with a flat. The engine works, the other wheels work, and maybe the road is a little bumpy... but you can at least drive a little bit. I think this is what Diane was referring to when she said she has one "mutated" gene. She has one CF car gene and one flat-tire car gene.
 
 Anyway, these "cars" do not correspond to how we feel. They are purely on the genetic level. For example, I have two CF cars - completely broken, yet, my lungs aren't *that bad*. The vast majority of us here have 2 completely broken genes, yet we have a huge huge range of health. Some of us work full time, and have 100% lung function. Someone with the very same genes might have 20% lung function.
 
 The error, and the confusion, is when someone tries to call their 2 broken cars (genes) "atypical" simply because they seem to be healthy so far. This REALLY makes it confusing for new people coming to the site, like you, and is a bit misleading. The term "atypical" should really only be applied to someone's genetic makeup, not simply their current health.
 
 Just because you are healthy now does not mean you cannot be helped immensely from treatment. Since CF is progressive, it's imperative to maintain your health as much as possible.
 
 Anyway I'm really rambling and probably confused you more. I hope I didn't, though. <img src="i/expressions/face-icon-small-blush.gif" border="0">

rvm1212 · Jul 12, 2008

HI!

My boyfriend was diagnosed with cf last year at 35. He started having a persistent cough during winter when he was around 30. After going to many doctors they diagnosed him with mild bronchiectasies. First sweat test negative-borderline? (I don´t remember the number). Two years later after asking many neumologist to do the cf genetic test he was diagnosed with cf. First test they only found one gene, so they did the more complete one and found the second one. They said this second mutation is usually associated with a milder form of the disease.
He is pancreatic sufficient so he doesn´t have any diggestive problems.

You should be follow at a cf center, since cf is progressive and prevention is the key. You should also do a ct scan to see if you have any bronchiectasies, (my boyfriend´s x-rays were and still are normal, and they only could find the bronchiectasies on ct).

This last year after the diagnosis my boyfriend has done really well. He had to take oral antibiotics twice last year and he is doing a lot of sport and respiratory therapy. His cough has completly gone away (except 5-6 days a year when he has an exacerbation, which for him indicates he has to take oral antibiotics). His lung funtion is completly normal (last fev a few days ago 97% Yeah!).

I think as soon as you start proper cf treatment, and start doing respiratory therapy your cough will improve a lot. I will recomend to start exercising too.

If you would like to talk or have any questions please write me an e-mail, my e-mail is rvm122@yahoo.es

I´m from spain so you may tell my english is not too good <img src="i/expressions/face-icon-small-smile.gif" border="0">

rvm1212 · Jul 12, 2008

HI!

My boyfriend was diagnosed with cf last year at 35. He started having a persistent cough during winter when he was around 30. After going to many doctors they diagnosed him with mild bronchiectasies. First sweat test negative-borderline? (I don´t remember the number). Two years later after asking many neumologist to do the cf genetic test he was diagnosed with cf. First test they only found one gene, so they did the more complete one and found the second one. They said this second mutation is usually associated with a milder form of the disease.
He is pancreatic sufficient so he doesn´t have any diggestive problems.

You should be follow at a cf center, since cf is progressive and prevention is the key. You should also do a ct scan to see if you have any bronchiectasies, (my boyfriend´s x-rays were and still are normal, and they only could find the bronchiectasies on ct).

This last year after the diagnosis my boyfriend has done really well. He had to take oral antibiotics twice last year and he is doing a lot of sport and respiratory therapy. His cough has completly gone away (except 5-6 days a year when he has an exacerbation, which for him indicates he has to take oral antibiotics). His lung funtion is completly normal (last fev a few days ago 97% Yeah!).

I think as soon as you start proper cf treatment, and start doing respiratory therapy your cough will improve a lot. I will recomend to start exercising too.

If you would like to talk or have any questions please write me an e-mail, my e-mail is rvm122@yahoo.es

I´m from spain so you may tell my english is not too good <img src="i/expressions/face-icon-small-smile.gif" border="0">

rvm1212 · Jul 12, 2008

HI!

My boyfriend was diagnosed with cf last year at 35. He started having a persistent cough during winter when he was around 30. After going to many doctors they diagnosed him with mild bronchiectasies. First sweat test negative-borderline? (I don´t remember the number). Two years later after asking many neumologist to do the cf genetic test he was diagnosed with cf. First test they only found one gene, so they did the more complete one and found the second one. They said this second mutation is usually associated with a milder form of the disease.
He is pancreatic sufficient so he doesn´t have any diggestive problems.

You should be follow at a cf center, since cf is progressive and prevention is the key. You should also do a ct scan to see if you have any bronchiectasies, (my boyfriend´s x-rays were and still are normal, and they only could find the bronchiectasies on ct).

This last year after the diagnosis my boyfriend has done really well. He had to take oral antibiotics twice last year and he is doing a lot of sport and respiratory therapy. His cough has completly gone away (except 5-6 days a year when he has an exacerbation, which for him indicates he has to take oral antibiotics). His lung funtion is completly normal (last fev a few days ago 97% Yeah!).

I think as soon as you start proper cf treatment, and start doing respiratory therapy your cough will improve a lot. I will recomend to start exercising too.

If you would like to talk or have any questions please write me an e-mail, my e-mail is rvm122@yahoo.es

I´m from spain so you may tell my english is not too good <img src="i/expressions/face-icon-small-smile.gif" border="0">

rvm1212 · Jul 12, 2008

HI!

My boyfriend was diagnosed with cf last year at 35. He started having a persistent cough during winter when he was around 30. After going to many doctors they diagnosed him with mild bronchiectasies. First sweat test negative-borderline? (I don´t remember the number). Two years later after asking many neumologist to do the cf genetic test he was diagnosed with cf. First test they only found one gene, so they did the more complete one and found the second one. They said this second mutation is usually associated with a milder form of the disease.
He is pancreatic sufficient so he doesn´t have any diggestive problems.

You should be follow at a cf center, since cf is progressive and prevention is the key. You should also do a ct scan to see if you have any bronchiectasies, (my boyfriend´s x-rays were and still are normal, and they only could find the bronchiectasies on ct).

This last year after the diagnosis my boyfriend has done really well. He had to take oral antibiotics twice last year and he is doing a lot of sport and respiratory therapy. His cough has completly gone away (except 5-6 days a year when he has an exacerbation, which for him indicates he has to take oral antibiotics). His lung funtion is completly normal (last fev a few days ago 97% Yeah!).

I think as soon as you start proper cf treatment, and start doing respiratory therapy your cough will improve a lot. I will recomend to start exercising too.

If you would like to talk or have any questions please write me an e-mail, my e-mail is rvm122@yahoo.es

I´m from spain so you may tell my english is not too good <img src="i/expressions/face-icon-small-smile.gif" border="0">

rvm1212 · Jul 12, 2008

HI!
 
 My boyfriend was diagnosed with cf last year at 35. He started having a persistent cough during winter when he was around 30. After going to many doctors they diagnosed him with mild bronchiectasies. First sweat test negative-borderline? (I don´t remember the number). Two years later after asking many neumologist to do the cf genetic test he was diagnosed with cf. First test they only found one gene, so they did the more complete one and found the second one. They said this second mutation is usually associated with a milder form of the disease.
 He is pancreatic sufficient so he doesn´t have any diggestive problems.
 
 You should be follow at a cf center, since cf is progressive and prevention is the key. You should also do a ct scan to see if you have any bronchiectasies, (my boyfriend´s x-rays were and still are normal, and they only could find the bronchiectasies on ct).
 
 This last year after the diagnosis my boyfriend has done really well. He had to take oral antibiotics twice last year and he is doing a lot of sport and respiratory therapy. His cough has completly gone away (except 5-6 days a year when he has an exacerbation, which for him indicates he has to take oral antibiotics). His lung funtion is completly normal (last fev a few days ago 97% Yeah!).
 
 I think as soon as you start proper cf treatment, and start doing respiratory therapy your cough will improve a lot. I will recomend to start exercising too.
 
 If you would like to talk or have any questions please write me an e-mail, my e-mail is rvm122@yahoo.es
 
 I´m from spain so you may tell my english is not too good <img src="i/expressions/face-icon-small-smile.gif" border="0">

Questions about adult diagnosis

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