Pregnant-child diagnosed

[Mommafirst]

Hi Jill,

I'm a 37 year old mom of three, and while my daughter wasn't diagnosed until 5 months, I do know all the feelings you are referring to. Life can (and will) be normal -- whatever normal is. Normal is just going to be a little different than you had imagined, but CF or not it always is.

Having a diagnosis now means that your child will have excellent care even before he/she is born. Furthermore, CF care has changed dramatically in the last 20 years. We have treatments, knowledge and prevention that didn't exist. So if many CFers today are doing pretty well into their 20's & 30's, there is a good chance that our kids will live long lives. And while those lives will be spotted with hospital stays and doctors visits, there is also lots of time for normal things and to become incredibly productive contributions to our society.

As far as daycare, etc. Its really a personal choice. The same as it would be if your child didn't have cf. I chose not to use outside daycares before CF was in our life. Just didn't work for us. But if it works for you, you'll go that way. Talk to the CF doctor and see what they say. Ours said that if we could avoid daycare the first year, it would be great, but if we couldn't we couldn't.

One of the hardest things is not knowing how your child is going to present with Cf. My daughter was diagnosed without any clinical symptoms, so like you are dealing with, I had a hard time focusing on what our life with CF would be. But you just have to take each day as it comes. My daughter is now dealing with some mild, non-lung, symptoms now, but we are staying on top of everything.

As for the guilt, it sucks, but it does die down. I think a lot of how you cope with it depends on your world view. I see genetics from the survival of the fittest perspective, meaning its just natures way of preservation that is luckily counteracted by modern meds. I don't believe I (or any of us) did anything to deserve this.

HUGS to you -- you will adjust. Come here for info or to vent anytime. Its an amazing community.

 

[Mommafirst]

Hi Jill,

I'm a 37 year old mom of three, and while my daughter wasn't diagnosed until 5 months, I do know all the feelings you are referring to. Life can (and will) be normal -- whatever normal is. Normal is just going to be a little different than you had imagined, but CF or not it always is.

Having a diagnosis now means that your child will have excellent care even before he/she is born. Furthermore, CF care has changed dramatically in the last 20 years. We have treatments, knowledge and prevention that didn't exist. So if many CFers today are doing pretty well into their 20's & 30's, there is a good chance that our kids will live long lives. And while those lives will be spotted with hospital stays and doctors visits, there is also lots of time for normal things and to become incredibly productive contributions to our society.

As far as daycare, etc. Its really a personal choice. The same as it would be if your child didn't have cf. I chose not to use outside daycares before CF was in our life. Just didn't work for us. But if it works for you, you'll go that way. Talk to the CF doctor and see what they say. Ours said that if we could avoid daycare the first year, it would be great, but if we couldn't we couldn't.

One of the hardest things is not knowing how your child is going to present with Cf. My daughter was diagnosed without any clinical symptoms, so like you are dealing with, I had a hard time focusing on what our life with CF would be. But you just have to take each day as it comes. My daughter is now dealing with some mild, non-lung, symptoms now, but we are staying on top of everything.

As for the guilt, it sucks, but it does die down. I think a lot of how you cope with it depends on your world view. I see genetics from the survival of the fittest perspective, meaning its just natures way of preservation that is luckily counteracted by modern meds. I don't believe I (or any of us) did anything to deserve this.

HUGS to you -- you will adjust. Come here for info or to vent anytime. Its an amazing community.

 

[Mommafirst]

Hi Jill,

I'm a 37 year old mom of three, and while my daughter wasn't diagnosed until 5 months, I do know all the feelings you are referring to. Life can (and will) be normal -- whatever normal is. Normal is just going to be a little different than you had imagined, but CF or not it always is.

Having a diagnosis now means that your child will have excellent care even before he/she is born. Furthermore, CF care has changed dramatically in the last 20 years. We have treatments, knowledge and prevention that didn't exist. So if many CFers today are doing pretty well into their 20's & 30's, there is a good chance that our kids will live long lives. And while those lives will be spotted with hospital stays and doctors visits, there is also lots of time for normal things and to become incredibly productive contributions to our society.

As far as daycare, etc. Its really a personal choice. The same as it would be if your child didn't have cf. I chose not to use outside daycares before CF was in our life. Just didn't work for us. But if it works for you, you'll go that way. Talk to the CF doctor and see what they say. Ours said that if we could avoid daycare the first year, it would be great, but if we couldn't we couldn't.

One of the hardest things is not knowing how your child is going to present with Cf. My daughter was diagnosed without any clinical symptoms, so like you are dealing with, I had a hard time focusing on what our life with CF would be. But you just have to take each day as it comes. My daughter is now dealing with some mild, non-lung, symptoms now, but we are staying on top of everything.

As for the guilt, it sucks, but it does die down. I think a lot of how you cope with it depends on your world view. I see genetics from the survival of the fittest perspective, meaning its just natures way of preservation that is luckily counteracted by modern meds. I don't believe I (or any of us) did anything to deserve this.

HUGS to you -- you will adjust. Come here for info or to vent anytime. Its an amazing community.

 

[Mommafirst]

Hi Jill,

I'm a 37 year old mom of three, and while my daughter wasn't diagnosed until 5 months, I do know all the feelings you are referring to. Life can (and will) be normal -- whatever normal is. Normal is just going to be a little different than you had imagined, but CF or not it always is.

Having a diagnosis now means that your child will have excellent care even before he/she is born. Furthermore, CF care has changed dramatically in the last 20 years. We have treatments, knowledge and prevention that didn't exist. So if many CFers today are doing pretty well into their 20's & 30's, there is a good chance that our kids will live long lives. And while those lives will be spotted with hospital stays and doctors visits, there is also lots of time for normal things and to become incredibly productive contributions to our society.

As far as daycare, etc. Its really a personal choice. The same as it would be if your child didn't have cf. I chose not to use outside daycares before CF was in our life. Just didn't work for us. But if it works for you, you'll go that way. Talk to the CF doctor and see what they say. Ours said that if we could avoid daycare the first year, it would be great, but if we couldn't we couldn't.

One of the hardest things is not knowing how your child is going to present with Cf. My daughter was diagnosed without any clinical symptoms, so like you are dealing with, I had a hard time focusing on what our life with CF would be. But you just have to take each day as it comes. My daughter is now dealing with some mild, non-lung, symptoms now, but we are staying on top of everything.

As for the guilt, it sucks, but it does die down. I think a lot of how you cope with it depends on your world view. I see genetics from the survival of the fittest perspective, meaning its just natures way of preservation that is luckily counteracted by modern meds. I don't believe I (or any of us) did anything to deserve this.

HUGS to you -- you will adjust. Come here for info or to vent anytime. Its an amazing community.

 

[Mommafirst]

Hi Jill,

I'm a 37 year old mom of three, and while my daughter wasn't diagnosed until 5 months, I do know all the feelings you are referring to. Life can (and will) be normal -- whatever normal is. Normal is just going to be a little different than you had imagined, but CF or not it always is.

Having a diagnosis now means that your child will have excellent care even before he/she is born. Furthermore, CF care has changed dramatically in the last 20 years. We have treatments, knowledge and prevention that didn't exist. So if many CFers today are doing pretty well into their 20's & 30's, there is a good chance that our kids will live long lives. And while those lives will be spotted with hospital stays and doctors visits, there is also lots of time for normal things and to become incredibly productive contributions to our society.

As far as daycare, etc. Its really a personal choice. The same as it would be if your child didn't have cf. I chose not to use outside daycares before CF was in our life. Just didn't work for us. But if it works for you, you'll go that way. Talk to the CF doctor and see what they say. Ours said that if we could avoid daycare the first year, it would be great, but if we couldn't we couldn't.

One of the hardest things is not knowing how your child is going to present with Cf. My daughter was diagnosed without any clinical symptoms, so like you are dealing with, I had a hard time focusing on what our life with CF would be. But you just have to take each day as it comes. My daughter is now dealing with some mild, non-lung, symptoms now, but we are staying on top of everything.

As for the guilt, it sucks, but it does die down. I think a lot of how you cope with it depends on your world view. I see genetics from the survival of the fittest perspective, meaning its just natures way of preservation that is luckily counteracted by modern meds. I don't believe I (or any of us) did anything to deserve this.

HUGS to you -- you will adjust. Come here for info or to vent anytime. Its an amazing community.

 

[Skye]

Hi Jill,

You have found a great site for support! I thought you might want to hear from one of the adults on the board<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 39 and was dx'd at 2 during a time when very little was known about how to treat CF. I have had a very normal life in spite of CF. I was an athlete in grade school and high school. I have a master's degree in speech pathology and I pulled a 4.0 in college<img src="i/expressions/face-icon-small-smile.gif" border="0"> I now have a private speech therapy practice and I help children with disabilities. Great husband of 13 years and an 8 year old daughter.

I had a "powerful" mother who insisted that CF not become my identity. Fear was not in her vocabulary<img src="i/expressions/face-icon-small-smile.gif" border="0"> She tackled every obstacle with faith and hope. Those are very powerful tools! Grab onto them early and use them often<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

Hi Jill,

You have found a great site for support! I thought you might want to hear from one of the adults on the board<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 39 and was dx'd at 2 during a time when very little was known about how to treat CF. I have had a very normal life in spite of CF. I was an athlete in grade school and high school. I have a master's degree in speech pathology and I pulled a 4.0 in college<img src="i/expressions/face-icon-small-smile.gif" border="0"> I now have a private speech therapy practice and I help children with disabilities. Great husband of 13 years and an 8 year old daughter.

I had a "powerful" mother who insisted that CF not become my identity. Fear was not in her vocabulary<img src="i/expressions/face-icon-small-smile.gif" border="0"> She tackled every obstacle with faith and hope. Those are very powerful tools! Grab onto them early and use them often<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

Hi Jill,

You have found a great site for support! I thought you might want to hear from one of the adults on the board<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 39 and was dx'd at 2 during a time when very little was known about how to treat CF. I have had a very normal life in spite of CF. I was an athlete in grade school and high school. I have a master's degree in speech pathology and I pulled a 4.0 in college<img src="i/expressions/face-icon-small-smile.gif" border="0"> I now have a private speech therapy practice and I help children with disabilities. Great husband of 13 years and an 8 year old daughter.

I had a "powerful" mother who insisted that CF not become my identity. Fear was not in her vocabulary<img src="i/expressions/face-icon-small-smile.gif" border="0"> She tackled every obstacle with faith and hope. Those are very powerful tools! Grab onto them early and use them often<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

Hi Jill,

You have found a great site for support! I thought you might want to hear from one of the adults on the board<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 39 and was dx'd at 2 during a time when very little was known about how to treat CF. I have had a very normal life in spite of CF. I was an athlete in grade school and high school. I have a master's degree in speech pathology and I pulled a 4.0 in college<img src="i/expressions/face-icon-small-smile.gif" border="0"> I now have a private speech therapy practice and I help children with disabilities. Great husband of 13 years and an 8 year old daughter.

I had a "powerful" mother who insisted that CF not become my identity. Fear was not in her vocabulary<img src="i/expressions/face-icon-small-smile.gif" border="0"> She tackled every obstacle with faith and hope. Those are very powerful tools! Grab onto them early and use them often<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

Hi Jill,

You have found a great site for support! I thought you might want to hear from one of the adults on the board<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 39 and was dx'd at 2 during a time when very little was known about how to treat CF. I have had a very normal life in spite of CF. I was an athlete in grade school and high school. I have a master's degree in speech pathology and I pulled a 4.0 in college<img src="i/expressions/face-icon-small-smile.gif" border="0"> I now have a private speech therapy practice and I help children with disabilities. Great husband of 13 years and an 8 year old daughter.

I had a "powerful" mother who insisted that CF not become my identity. Fear was not in her vocabulary<img src="i/expressions/face-icon-small-smile.gif" border="0"> She tackled every obstacle with faith and hope. Those are very powerful tools! Grab onto them early and use them often<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[usedtobeinca]

Hi Jill,
First I'd like to ditto the comments others have provided here. While our little guy wasn't diagnosed in-utero (dx @3 days instead) we knew shortly after the 20wk ultrasound that there was a high probability of CF. The good news is that you know and that you can make decisions based on this such as getting in contact with the nearest accredited CF care center that your insurance allows access to, how to adjust your birthplan to accommodate the situation (which hospital/docs), time to educate (but not scare) yourself, etc.

Like all the parents on this site, we've fully adjusted to caring for a CF child and making their lives (and ours) as normal as possible. Our son (18mo) has a fairly normal life in that he has play dates, trick-or-treats, runs around at the park, walks, is learning to talk, goes hiking with us - all the normal kiddo behaviors. We administer treatments and medications in the mornings and evenings - which typically takes 30-40min or so each time. Our little one also takes pancreatic enzymes with each meal, snack, nibble. I'm leaving out a few details here so as not to overwhelm - but that's basically the routine when he's well. Out little guy has been babysat and we fully intend on him being in daycare, preschool an so-on when the time comes. We did some hospital time the summer after he was born but have thankfully not been back in the last 15mo. Emily (AbbysMoma) hit the nail on the head with how others perceive CF kiddos/parents - it can be tough at times as people offer uninvited and uninformed opinions - seeming to forget that your situation is quite different than theirs. This happens to some extent with parenthood on the whole but is exacerbated by the CF situation because much of the time your kiddo looks to be just fine.

We are obviously very cognizant of his diet and health - and the CF clinic appts are generally longer and more rigorous than doc appts for non-CF kids. As for the the guilt - this can be dealt with in many ways. We found the social worker at our CF clinic to be very helpful for getting through the guilt and associated emotions. Involvement in CF Foundation functions has been helpful as well. It is our understanding that there isn't reliable data yet on outcomes of kiddos who are dx at birth or in-utero and begin treatments with all the latest meds/techniques immediately, but the assumption is that their overall health and quality of life will be as good or exceed that of prior generations of CFers.

Our little man is the light of our lives and we would would not have done anything differently if we'd known before he had him. We stay optimistic and hopeful for the future. If anything it intensifies the reality that each day should be appreciated. We have a ton of fun with our little man and are SO excited to watch him learn and grow.

 

[usedtobeinca]

Hi Jill,
First I'd like to ditto the comments others have provided here. While our little guy wasn't diagnosed in-utero (dx @3 days instead) we knew shortly after the 20wk ultrasound that there was a high probability of CF. The good news is that you know and that you can make decisions based on this such as getting in contact with the nearest accredited CF care center that your insurance allows access to, how to adjust your birthplan to accommodate the situation (which hospital/docs), time to educate (but not scare) yourself, etc.

Like all the parents on this site, we've fully adjusted to caring for a CF child and making their lives (and ours) as normal as possible. Our son (18mo) has a fairly normal life in that he has play dates, trick-or-treats, runs around at the park, walks, is learning to talk, goes hiking with us - all the normal kiddo behaviors. We administer treatments and medications in the mornings and evenings - which typically takes 30-40min or so each time. Our little one also takes pancreatic enzymes with each meal, snack, nibble. I'm leaving out a few details here so as not to overwhelm - but that's basically the routine when he's well. Out little guy has been babysat and we fully intend on him being in daycare, preschool an so-on when the time comes. We did some hospital time the summer after he was born but have thankfully not been back in the last 15mo. Emily (AbbysMoma) hit the nail on the head with how others perceive CF kiddos/parents - it can be tough at times as people offer uninvited and uninformed opinions - seeming to forget that your situation is quite different than theirs. This happens to some extent with parenthood on the whole but is exacerbated by the CF situation because much of the time your kiddo looks to be just fine.

We are obviously very cognizant of his diet and health - and the CF clinic appts are generally longer and more rigorous than doc appts for non-CF kids. As for the the guilt - this can be dealt with in many ways. We found the social worker at our CF clinic to be very helpful for getting through the guilt and associated emotions. Involvement in CF Foundation functions has been helpful as well. It is our understanding that there isn't reliable data yet on outcomes of kiddos who are dx at birth or in-utero and begin treatments with all the latest meds/techniques immediately, but the assumption is that their overall health and quality of life will be as good or exceed that of prior generations of CFers.

Our little man is the light of our lives and we would would not have done anything differently if we'd known before he had him. We stay optimistic and hopeful for the future. If anything it intensifies the reality that each day should be appreciated. We have a ton of fun with our little man and are SO excited to watch him learn and grow.

 

[usedtobeinca]

Hi Jill,
First I'd like to ditto the comments others have provided here. While our little guy wasn't diagnosed in-utero (dx @3 days instead) we knew shortly after the 20wk ultrasound that there was a high probability of CF. The good news is that you know and that you can make decisions based on this such as getting in contact with the nearest accredited CF care center that your insurance allows access to, how to adjust your birthplan to accommodate the situation (which hospital/docs), time to educate (but not scare) yourself, etc.

Like all the parents on this site, we've fully adjusted to caring for a CF child and making their lives (and ours) as normal as possible. Our son (18mo) has a fairly normal life in that he has play dates, trick-or-treats, runs around at the park, walks, is learning to talk, goes hiking with us - all the normal kiddo behaviors. We administer treatments and medications in the mornings and evenings - which typically takes 30-40min or so each time. Our little one also takes pancreatic enzymes with each meal, snack, nibble. I'm leaving out a few details here so as not to overwhelm - but that's basically the routine when he's well. Out little guy has been babysat and we fully intend on him being in daycare, preschool an so-on when the time comes. We did some hospital time the summer after he was born but have thankfully not been back in the last 15mo. Emily (AbbysMoma) hit the nail on the head with how others perceive CF kiddos/parents - it can be tough at times as people offer uninvited and uninformed opinions - seeming to forget that your situation is quite different than theirs. This happens to some extent with parenthood on the whole but is exacerbated by the CF situation because much of the time your kiddo looks to be just fine.

We are obviously very cognizant of his diet and health - and the CF clinic appts are generally longer and more rigorous than doc appts for non-CF kids. As for the the guilt - this can be dealt with in many ways. We found the social worker at our CF clinic to be very helpful for getting through the guilt and associated emotions. Involvement in CF Foundation functions has been helpful as well. It is our understanding that there isn't reliable data yet on outcomes of kiddos who are dx at birth or in-utero and begin treatments with all the latest meds/techniques immediately, but the assumption is that their overall health and quality of life will be as good or exceed that of prior generations of CFers.

Our little man is the light of our lives and we would would not have done anything differently if we'd known before he had him. We stay optimistic and hopeful for the future. If anything it intensifies the reality that each day should be appreciated. We have a ton of fun with our little man and are SO excited to watch him learn and grow.

 

[usedtobeinca]

Hi Jill,
First I'd like to ditto the comments others have provided here. While our little guy wasn't diagnosed in-utero (dx @3 days instead) we knew shortly after the 20wk ultrasound that there was a high probability of CF. The good news is that you know and that you can make decisions based on this such as getting in contact with the nearest accredited CF care center that your insurance allows access to, how to adjust your birthplan to accommodate the situation (which hospital/docs), time to educate (but not scare) yourself, etc.

Like all the parents on this site, we've fully adjusted to caring for a CF child and making their lives (and ours) as normal as possible. Our son (18mo) has a fairly normal life in that he has play dates, trick-or-treats, runs around at the park, walks, is learning to talk, goes hiking with us - all the normal kiddo behaviors. We administer treatments and medications in the mornings and evenings - which typically takes 30-40min or so each time. Our little one also takes pancreatic enzymes with each meal, snack, nibble. I'm leaving out a few details here so as not to overwhelm - but that's basically the routine when he's well. Out little guy has been babysat and we fully intend on him being in daycare, preschool an so-on when the time comes. We did some hospital time the summer after he was born but have thankfully not been back in the last 15mo. Emily (AbbysMoma) hit the nail on the head with how others perceive CF kiddos/parents - it can be tough at times as people offer uninvited and uninformed opinions - seeming to forget that your situation is quite different than theirs. This happens to some extent with parenthood on the whole but is exacerbated by the CF situation because much of the time your kiddo looks to be just fine.

We are obviously very cognizant of his diet and health - and the CF clinic appts are generally longer and more rigorous than doc appts for non-CF kids. As for the the guilt - this can be dealt with in many ways. We found the social worker at our CF clinic to be very helpful for getting through the guilt and associated emotions. Involvement in CF Foundation functions has been helpful as well. It is our understanding that there isn't reliable data yet on outcomes of kiddos who are dx at birth or in-utero and begin treatments with all the latest meds/techniques immediately, but the assumption is that their overall health and quality of life will be as good or exceed that of prior generations of CFers.

Our little man is the light of our lives and we would would not have done anything differently if we'd known before he had him. We stay optimistic and hopeful for the future. If anything it intensifies the reality that each day should be appreciated. We have a ton of fun with our little man and are SO excited to watch him learn and grow.

 

[usedtobeinca]

Hi Jill,
First I'd like to ditto the comments others have provided here. While our little guy wasn't diagnosed in-utero (dx @3 days instead) we knew shortly after the 20wk ultrasound that there was a high probability of CF. The good news is that you know and that you can make decisions based on this such as getting in contact with the nearest accredited CF care center that your insurance allows access to, how to adjust your birthplan to accommodate the situation (which hospital/docs), time to educate (but not scare) yourself, etc.

Like all the parents on this site, we've fully adjusted to caring for a CF child and making their lives (and ours) as normal as possible. Our son (18mo) has a fairly normal life in that he has play dates, trick-or-treats, runs around at the park, walks, is learning to talk, goes hiking with us - all the normal kiddo behaviors. We administer treatments and medications in the mornings and evenings - which typically takes 30-40min or so each time. Our little one also takes pancreatic enzymes with each meal, snack, nibble. I'm leaving out a few details here so as not to overwhelm - but that's basically the routine when he's well. Out little guy has been babysat and we fully intend on him being in daycare, preschool an so-on when the time comes. We did some hospital time the summer after he was born but have thankfully not been back in the last 15mo. Emily (AbbysMoma) hit the nail on the head with how others perceive CF kiddos/parents - it can be tough at times as people offer uninvited and uninformed opinions - seeming to forget that your situation is quite different than theirs. This happens to some extent with parenthood on the whole but is exacerbated by the CF situation because much of the time your kiddo looks to be just fine.

We are obviously very cognizant of his diet and health - and the CF clinic appts are generally longer and more rigorous than doc appts for non-CF kids. As for the the guilt - this can be dealt with in many ways. We found the social worker at our CF clinic to be very helpful for getting through the guilt and associated emotions. Involvement in CF Foundation functions has been helpful as well. It is our understanding that there isn't reliable data yet on outcomes of kiddos who are dx at birth or in-utero and begin treatments with all the latest meds/techniques immediately, but the assumption is that their overall health and quality of life will be as good or exceed that of prior generations of CFers.

Our little man is the light of our lives and we would would not have done anything differently if we'd known before he had him. We stay optimistic and hopeful for the future. If anything it intensifies the reality that each day should be appreciated. We have a ton of fun with our little man and are SO excited to watch him learn and grow.

 

[Alyssa]

Jill,

I have to say ditto to what others have already posted and wanted to add that just getting on this website will help a lot! Being able to communicate with other parents and older people with CF should go a long ways toward making you feel more comfortable and informed. I also think that you may be reading some outdated information (there is a lot out there) so do be careful of assuming that your child will be constantly ill and cannot lead a normal life.... yes, CF is a tricky thing and can be very ugly, but there are a lot of people who lead pretty normal "CF" lives and do quite well for many years.... I know of a lot of older adults still alive and kick'n in their 50's 60's and 70's......

Below is a copy of a post that I created not long ago for other mother - most of it was created for a mother before that..... but you all have some of the same questions and fears (we all do!) ... A lot of the information typed by me is specific to milder cases and young adults with CF from the perspective of, they grow up and become adults just like every other kid....please take the time to read through it, I hope it will help you. The links are other posts from here so you will see other mother's questions and those who replied as well (so it's not all just me

****************************
Here is a copy of what I posted to another mom recently - it is leaning a little towards having two specific gene types, but in general both moms that I was typing to were basically curious about how life might be for their child and the idea of being an adult with CF. Below are some links to posts that I have replied in - if I remember correctly they talk about how life is for my adult children and another adult with CF in her 30's that I know.

You can also learn more about my kids from my blog (link in my signature line)

***************
Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because <b>she was particularly concerned about the possibility of outliving her child</b>.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. <b>Below is some information about the three adults with CF that I know quite a bit about..... </b>

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives <b>is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Jill,

I have to say ditto to what others have already posted and wanted to add that just getting on this website will help a lot! Being able to communicate with other parents and older people with CF should go a long ways toward making you feel more comfortable and informed. I also think that you may be reading some outdated information (there is a lot out there) so do be careful of assuming that your child will be constantly ill and cannot lead a normal life.... yes, CF is a tricky thing and can be very ugly, but there are a lot of people who lead pretty normal "CF" lives and do quite well for many years.... I know of a lot of older adults still alive and kick'n in their 50's 60's and 70's......

Below is a copy of a post that I created not long ago for other mother - most of it was created for a mother before that..... but you all have some of the same questions and fears (we all do!) ... A lot of the information typed by me is specific to milder cases and young adults with CF from the perspective of, they grow up and become adults just like every other kid....please take the time to read through it, I hope it will help you. The links are other posts from here so you will see other mother's questions and those who replied as well (so it's not all just me

****************************
Here is a copy of what I posted to another mom recently - it is leaning a little towards having two specific gene types, but in general both moms that I was typing to were basically curious about how life might be for their child and the idea of being an adult with CF. Below are some links to posts that I have replied in - if I remember correctly they talk about how life is for my adult children and another adult with CF in her 30's that I know.

You can also learn more about my kids from my blog (link in my signature line)

***************
Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because <b>she was particularly concerned about the possibility of outliving her child</b>.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. <b>Below is some information about the three adults with CF that I know quite a bit about..... </b>

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives <b>is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Jill,

I have to say ditto to what others have already posted and wanted to add that just getting on this website will help a lot! Being able to communicate with other parents and older people with CF should go a long ways toward making you feel more comfortable and informed. I also think that you may be reading some outdated information (there is a lot out there) so do be careful of assuming that your child will be constantly ill and cannot lead a normal life.... yes, CF is a tricky thing and can be very ugly, but there are a lot of people who lead pretty normal "CF" lives and do quite well for many years.... I know of a lot of older adults still alive and kick'n in their 50's 60's and 70's......

Below is a copy of a post that I created not long ago for other mother - most of it was created for a mother before that..... but you all have some of the same questions and fears (we all do!) ... A lot of the information typed by me is specific to milder cases and young adults with CF from the perspective of, they grow up and become adults just like every other kid....please take the time to read through it, I hope it will help you. The links are other posts from here so you will see other mother's questions and those who replied as well (so it's not all just me

****************************
Here is a copy of what I posted to another mom recently - it is leaning a little towards having two specific gene types, but in general both moms that I was typing to were basically curious about how life might be for their child and the idea of being an adult with CF. Below are some links to posts that I have replied in - if I remember correctly they talk about how life is for my adult children and another adult with CF in her 30's that I know.

You can also learn more about my kids from my blog (link in my signature line)

***************
Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because <b>she was particularly concerned about the possibility of outliving her child</b>.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. <b>Below is some information about the three adults with CF that I know quite a bit about..... </b>

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives <b>is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Jill,

I have to say ditto to what others have already posted and wanted to add that just getting on this website will help a lot! Being able to communicate with other parents and older people with CF should go a long ways toward making you feel more comfortable and informed. I also think that you may be reading some outdated information (there is a lot out there) so do be careful of assuming that your child will be constantly ill and cannot lead a normal life.... yes, CF is a tricky thing and can be very ugly, but there are a lot of people who lead pretty normal "CF" lives and do quite well for many years.... I know of a lot of older adults still alive and kick'n in their 50's 60's and 70's......

Below is a copy of a post that I created not long ago for other mother - most of it was created for a mother before that..... but you all have some of the same questions and fears (we all do!) ... A lot of the information typed by me is specific to milder cases and young adults with CF from the perspective of, they grow up and become adults just like every other kid....please take the time to read through it, I hope it will help you. The links are other posts from here so you will see other mother's questions and those who replied as well (so it's not all just me

****************************
Here is a copy of what I posted to another mom recently - it is leaning a little towards having two specific gene types, but in general both moms that I was typing to were basically curious about how life might be for their child and the idea of being an adult with CF. Below are some links to posts that I have replied in - if I remember correctly they talk about how life is for my adult children and another adult with CF in her 30's that I know.

You can also learn more about my kids from my blog (link in my signature line)

***************
Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because <b>she was particularly concerned about the possibility of outliving her child</b>.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. <b>Below is some information about the three adults with CF that I know quite a bit about..... </b>

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives <b>is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Jill,

I have to say ditto to what others have already posted and wanted to add that just getting on this website will help a lot! Being able to communicate with other parents and older people with CF should go a long ways toward making you feel more comfortable and informed. I also think that you may be reading some outdated information (there is a lot out there) so do be careful of assuming that your child will be constantly ill and cannot lead a normal life.... yes, CF is a tricky thing and can be very ugly, but there are a lot of people who lead pretty normal "CF" lives and do quite well for many years.... I know of a lot of older adults still alive and kick'n in their 50's 60's and 70's......

Below is a copy of a post that I created not long ago for other mother - most of it was created for a mother before that..... but you all have some of the same questions and fears (we all do!) ... A lot of the information typed by me is specific to milder cases and young adults with CF from the perspective of, they grow up and become adults just like every other kid....please take the time to read through it, I hope it will help you. The links are other posts from here so you will see other mother's questions and those who replied as well (so it's not all just me

****************************
Here is a copy of what I posted to another mom recently - it is leaning a little towards having two specific gene types, but in general both moms that I was typing to were basically curious about how life might be for their child and the idea of being an adult with CF. Below are some links to posts that I have replied in - if I remember correctly they talk about how life is for my adult children and another adult with CF in her 30's that I know.

You can also learn more about my kids from my blog (link in my signature line)

***************
Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.c...highlight_key=y">http://forums.cysticfibrosis.c...highlight_key=y</a>


Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because <b>she was particularly concerned about the possibility of outliving her child</b>.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. <b>Below is some information about the three adults with CF that I know quite a bit about..... </b>

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives <b>is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************