I have a question

[TonyaH]

You are right..this is baffling! It must be very difficult for you to be facing this disease head on right off the bat with your new little one, and see your boyfriends mom seem so nonchalent about the whole thing.

Perhaps you could talk with your boyfriend and explain your confusion. He will certainly understand your need to clarify all of this newfound knowledge about CF and the affect is has on him as well as Alexa. Maybe he needs to understand the issues of cross contamination between him and the baby. Maybe if he realizes how important keeping himself healthy is for Alexa, he will get involved with a CF center that will offer you more answers about his diagnosis and status of health. (And it goes both ways...Alexa's disease could affect his health and this is a good time to begin seeing a specialist, if indeed he does have CF and is not a carrier.) In any case, I would be a little nervous about him being around the baby without knowing if their are certain precautions that should be taken to keep them both healthy. Good luck to you and your family!

 

[TonyaH]

You are right..this is baffling! It must be very difficult for you to be facing this disease head on right off the bat with your new little one, and see your boyfriends mom seem so nonchalent about the whole thing.

Perhaps you could talk with your boyfriend and explain your confusion. He will certainly understand your need to clarify all of this newfound knowledge about CF and the affect is has on him as well as Alexa. Maybe he needs to understand the issues of cross contamination between him and the baby. Maybe if he realizes how important keeping himself healthy is for Alexa, he will get involved with a CF center that will offer you more answers about his diagnosis and status of health. (And it goes both ways...Alexa's disease could affect his health and this is a good time to begin seeing a specialist, if indeed he does have CF and is not a carrier.) In any case, I would be a little nervous about him being around the baby without knowing if their are certain precautions that should be taken to keep them both healthy. Good luck to you and your family!

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[tapia]

I don't find it weird at all...

I was an infant when they found out (around 3 months old) that I had CF. In the begining they did do my treatments for me but as I got older I refused to do them. Plus I felt <i>normal</i>. Well, as time went on no one knew I had CF other than my mom, dad and siblings. I had no signs of it. I never felt sick and I felt fine. I had the common cold everyone gets. I did not do treatments and saw no doctors. Yes my parents did not tell me anything because they were so in denial that I had CF because I looked perfectly normal and hardly ever got sick.

Again I have no digestive issues only lung problems...

Well when I got pregnant with my daughter and caught PA, well that is when I found out that I had CF. Slap me in the face, and my parents, I was in and out of the hospital for the last five months of my pregnancy. I had chronic infections that they could not clear up. (I was pregnant so there were hardly any meds they could use. Well to the point...

Now I get sick more often...I have to be admitted every year to year and 1/2...and if I don't do my treatments I am in trouble because I can feel the difference in my breathing. I need my CF specialist because I get sick a lot more than I did when I was younger.

So now my parents and I have been learned and we are still learning all there is too CF. And I don't blame my parents for not keeping me on my meds. I think the idea of seeing that your child is not sick and believing that the docs could be wrong was what they felt. And they are wonderful and they hurt now because they wonder how my health would be now if they would have kept my meds going.

So I think you can go several years without saying you have CF but in the long run when it comes and bites you in the Ass...man you wish you could get back that lung function you no longer have.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[izemmom]

I understand what an uncomfortable position you are in, not wanting to rock the boat too much with your bf's mom..but, please remember that your FIRST responsibility is to that little one. At the end of the day, she is all that matters. Ask the questions you feel you need to ask, assert your knowledge of good, preventative care over her OPINION, seek help. I had to stand up and tell off an in-law who stated that I exxagerrate Emily's illness in order to get attention for myself, and it was terribly hard to do, even though I was angry. But, I just couldn't face a future where my descisions for Em's care were called into question or ridiculed at every turn. Things were rough, but they've settled down.

So, stand strong, and do what you have to for Alexa. She has cf whether or not her dad does, and that's all that matters.

Good luck. Keep posting and asking your questions! We are all here to help.

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him

 

[nicole781]

I do want to get him tested.....he's been a little resistant to it, mainly b/c he hates doctors (in the time i've been with him, he's only been to one, and that was only b/c he threw out his back) He's not covered under insurance right now though, so that may be another reason that he's not jumping at it. I know the lab offered to test him free of charge months ago, b/c of her diagnosis, but i admit we dropped the ball on that. I'm going to have to see if the offer still stands. thank you for bringing up the cross contamination issue.... i know he said he doesn't really see the point to get tested since we know that she has cf, but this should make him want to do it, and i didn't even think of it. His mom says that she gets updates from the cf foundation, and reads books on it and such, so it confuses me even more why she doesn't seem to think that this situation is really strange. I understand that without symptoms you can be in denial pretty easily, but the super confusing part for me is that she says that he DID have digestive issues when he was younger......i know you can't "grow out of them" and if he still did have issues, and doesn't take enzymes, i think i wouldve noticed some type of problem in the past year and a half that ive been living with him