I have a question

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

nicole781 · Jul 7, 2007

This may be a little long winded, so i'll say sorry now......
Ok, so Alexa was diagnosed with cf (ddf508) before she was born, and we're doing everything we can to keep her as healthy as possible for as long as possible. The thing I'm actually confused about is my boyfriend, her father.
The whole reason I even got tested to see if i was a carrier was that one day in passing he mentioned that he "had cf". I was confused then, but didn't know too much about it, and we didn't really talk about it until after i got pregnant. So when I got pregnant, I mentioned it to my doctor, who said that that sounded odd, since we had no problem getting pregnant at all. So, as I started learning more about cf, the more confused i am about him......now understand that his mother has been telling him that he has cf his whole life....but here are the things that I find odd:
-He had no problem getting me pregnant at all
- He has no problem gaining weight
- I've been with him almost 2 years adn I can count the times I've heard him cough on both hands
- His mom talks about his "digestive issues" that he had when he was younger that were because of his "cf" but he's not on enzymes now, and was never on enzymes.....he has no digestive issues now...
Now he supposedly has be treated by a cf doctor when he was younger, but he said he also never did any cpt......
So, the more I hear, the more something sounds off to me, and I just wanted you ask you guys if it sounds odd to you too.......I'm new at all this, but i feel like there's something not right.......

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

Wheezie · Jul 7, 2007

It sounds odd to me too, but I will say that there are several different mutations that cause different "types" of CF. Some people have lung problems, but no digestive issues; some people have only digestive problems; and so on. And even among those with the same exact mutations, there is a wide degree of variance in the severity of CF.

At any rate, I would suggest asking your boyfriend to get genetic testing himself to see if he actually does have CF and if so, what mutation he has. It could be that he is just a carrier (we know he has to AT LEAST be a carrier since Alexa has CF). If he does have CF, I would encourage him to begin seeing a CF specialist - just because he's feeling fine now doesn't mean he will always feel fine. CF is progressive, as I'm sure you know, so staying on top of it, even when you feel totally healthy, is very important. Also, seeing her daddy manage the disease properly could be very good for Alexa and conversely, seeing her daddy NOT doing treatments, etc. might have a negative effect on her as she gets older and begins to understand more about her CF.

Good luck - I hope this mystery will be solved quickly for you!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

JazzysMom · Jul 7, 2007

I do agree this needs to be clarified. There are people that are pretty "symptomless" with CF including the 2% of males with no problems in the fertility department. IMHO you should have him tested for two reasons. One is that IF he does have CF (even with his miraculous health) you at least know to be alert etc. Secondly he is a father now and that could have an impact on any decisions regarding the care of your child etc.

How old is your CF?

Either his Mother is totally wrong, misinformed/misunderstood, is a sick woman because she has made the whole thing up or is right and he has been very fortunate. IF nothing else the curiosity to clarify would do me in!

karismom · Jul 8, 2007

THAT IS SO WEIRD!!! Because if he does NOT have CF where did the inclination for him to say he does and then for Alexa to HAVE it come from!!! Ask him if he was sweat tested. How old is he now??? This IS crazy!

Keep us posted!!!

peace.

lisa <img src="i/expressions/rose.gif" border="0">

karismom · Jul 8, 2007

THAT IS SO WEIRD!!! Because if he does NOT have CF where did the inclination for him to say he does and then for Alexa to HAVE it come from!!! Ask him if he was sweat tested. How old is he now??? This IS crazy!

Keep us posted!!!

peace.

lisa <img src="i/expressions/rose.gif" border="0">

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