my daughter is 1 and has Cf please tell me some of your experiances

age · Oct 20, 2007

My daughter is one and has CF I wish I knew someone that had it so they could tell me some of their experiances so that I could believe a real persons life and not just the doctors opinions.
Thanks,
and any Any advice will help me.

age · Oct 20, 2007

My daughter is one and has CF I wish I knew someone that had it so they could tell me some of their experiances so that I could believe a real persons life and not just the doctors opinions.
Thanks,
and any Any advice will help me.

age · Oct 20, 2007

My daughter is one and has CF I wish I knew someone that had it so they could tell me some of their experiances so that I could believe a real persons life and not just the doctors opinions.
Thanks,
and any Any advice will help me.

age · Oct 20, 2007

My daughter is one and has CF I wish I knew someone that had it so they could tell me some of their experiances so that I could believe a real persons life and not just the doctors opinions.
Thanks,
and any Any advice will help me.

age · Oct 20, 2007

My daughter is one and has CF I wish I knew someone that had it so they could tell me some of their experiances so that I could believe a real persons life and not just the doctors opinions.
Thanks,
and any Any advice will help me.

julie · Oct 20, 2007

Welcome to the site.

I'm the wife of a man who just happens to have CF. He was diagnosed at 18 months because of failure to thrive. He participated in quite a few studies in the 80's and 90's for various CF medications and treatment.

He's 27 years old, a graduate of Washington State University (and looking into some Masters programs now), we've been married for 5 years and have 1 year old triplets.

Life is wonderful, not perfect, and not without difficult times, but it is good! He had 2 ER visits earlier this year for shorness of breath, and he was put on some intense at home treatment, which seemed to help tremendously. He goes to his CF doctor every 3-6 months (depending on how he feels), and does his Chest PT and CF nebulized medications, as well as takes digestive enzymes. He's never been admitted, and I think that has a lot to do with his involvement in sports as a child...keeping his lungs clear. he's been culturing staph and pseudomonas for about 12-15 years now.

He tried out for the police force in our area but couldn't pass because of his running time. He's a big guy, and he's worked HARD for his weight, but he's not much of a cardio person. In his SR year of Highschool he was 6ft and 145lbs. He is now up to 205lbs. He also tried to join the Marines out of HS but they wouldn't let him because of the CF. There are some roadblocks, but a CF diagnosis does not mean that someone can't live a fulfilling life.

If you have any questions, please ask them!!!!!

julie · Oct 20, 2007

Welcome to the site.

I'm the wife of a man who just happens to have CF. He was diagnosed at 18 months because of failure to thrive. He participated in quite a few studies in the 80's and 90's for various CF medications and treatment.

He's 27 years old, a graduate of Washington State University (and looking into some Masters programs now), we've been married for 5 years and have 1 year old triplets.

Life is wonderful, not perfect, and not without difficult times, but it is good! He had 2 ER visits earlier this year for shorness of breath, and he was put on some intense at home treatment, which seemed to help tremendously. He goes to his CF doctor every 3-6 months (depending on how he feels), and does his Chest PT and CF nebulized medications, as well as takes digestive enzymes. He's never been admitted, and I think that has a lot to do with his involvement in sports as a child...keeping his lungs clear. he's been culturing staph and pseudomonas for about 12-15 years now.

He tried out for the police force in our area but couldn't pass because of his running time. He's a big guy, and he's worked HARD for his weight, but he's not much of a cardio person. In his SR year of Highschool he was 6ft and 145lbs. He is now up to 205lbs. He also tried to join the Marines out of HS but they wouldn't let him because of the CF. There are some roadblocks, but a CF diagnosis does not mean that someone can't live a fulfilling life.

If you have any questions, please ask them!!!!!

julie · Oct 20, 2007

Welcome to the site.

I'm the wife of a man who just happens to have CF. He was diagnosed at 18 months because of failure to thrive. He participated in quite a few studies in the 80's and 90's for various CF medications and treatment.

He's 27 years old, a graduate of Washington State University (and looking into some Masters programs now), we've been married for 5 years and have 1 year old triplets.

Life is wonderful, not perfect, and not without difficult times, but it is good! He had 2 ER visits earlier this year for shorness of breath, and he was put on some intense at home treatment, which seemed to help tremendously. He goes to his CF doctor every 3-6 months (depending on how he feels), and does his Chest PT and CF nebulized medications, as well as takes digestive enzymes. He's never been admitted, and I think that has a lot to do with his involvement in sports as a child...keeping his lungs clear. he's been culturing staph and pseudomonas for about 12-15 years now.

He tried out for the police force in our area but couldn't pass because of his running time. He's a big guy, and he's worked HARD for his weight, but he's not much of a cardio person. In his SR year of Highschool he was 6ft and 145lbs. He is now up to 205lbs. He also tried to join the Marines out of HS but they wouldn't let him because of the CF. There are some roadblocks, but a CF diagnosis does not mean that someone can't live a fulfilling life.

If you have any questions, please ask them!!!!!

julie · Oct 20, 2007

Welcome to the site.

I'm the wife of a man who just happens to have CF. He was diagnosed at 18 months because of failure to thrive. He participated in quite a few studies in the 80's and 90's for various CF medications and treatment.

He's 27 years old, a graduate of Washington State University (and looking into some Masters programs now), we've been married for 5 years and have 1 year old triplets.

Life is wonderful, not perfect, and not without difficult times, but it is good! He had 2 ER visits earlier this year for shorness of breath, and he was put on some intense at home treatment, which seemed to help tremendously. He goes to his CF doctor every 3-6 months (depending on how he feels), and does his Chest PT and CF nebulized medications, as well as takes digestive enzymes. He's never been admitted, and I think that has a lot to do with his involvement in sports as a child...keeping his lungs clear. he's been culturing staph and pseudomonas for about 12-15 years now.

He tried out for the police force in our area but couldn't pass because of his running time. He's a big guy, and he's worked HARD for his weight, but he's not much of a cardio person. In his SR year of Highschool he was 6ft and 145lbs. He is now up to 205lbs. He also tried to join the Marines out of HS but they wouldn't let him because of the CF. There are some roadblocks, but a CF diagnosis does not mean that someone can't live a fulfilling life.

If you have any questions, please ask them!!!!!

julie · Oct 20, 2007

Welcome to the site.

I'm the wife of a man who just happens to have CF. He was diagnosed at 18 months because of failure to thrive. He participated in quite a few studies in the 80's and 90's for various CF medications and treatment.

He's 27 years old, a graduate of Washington State University (and looking into some Masters programs now), we've been married for 5 years and have 1 year old triplets.

Life is wonderful, not perfect, and not without difficult times, but it is good! He had 2 ER visits earlier this year for shorness of breath, and he was put on some intense at home treatment, which seemed to help tremendously. He goes to his CF doctor every 3-6 months (depending on how he feels), and does his Chest PT and CF nebulized medications, as well as takes digestive enzymes. He's never been admitted, and I think that has a lot to do with his involvement in sports as a child...keeping his lungs clear. he's been culturing staph and pseudomonas for about 12-15 years now.

He tried out for the police force in our area but couldn't pass because of his running time. He's a big guy, and he's worked HARD for his weight, but he's not much of a cardio person. In his SR year of Highschool he was 6ft and 145lbs. He is now up to 205lbs. He also tried to join the Marines out of HS but they wouldn't let him because of the CF. There are some roadblocks, but a CF diagnosis does not mean that someone can't live a fulfilling life.

If you have any questions, please ask them!!!!!

Mockingbird · Oct 21, 2007

I am 25 with CF in relatively good condition. I am still able to work full time, though it is much more difficult for me than healthy people. I am able to support myself financially, but only because I am still on my father's health insurance. They ruled me as someone with a disability or something so they cannot drop me unless I get married.

When I was born, I had congested lungs and pancreatic insufficiency (The two most common CF symptoms). When I was around 8, I got nasal polyps for the first time and had to have sinus surgury. They told me I would have to have repeat surgeries every five years, but i've only had to have one other one since then. When I was around 13, I had my first cleanout; my lung function had dropped really low and I needed a two-week course of antibiotics. At the time, my weight was also really low, and my doctor was considering putting me on a stomach tube. After the cleanout, however, my lungs improved greatly and so did my appetite. Around the age of 21, I was diagnosed with mild depression and first started having problems with chronic pain. About a year ago, I was diagnosed with glucose intolerance (the forerunner for CF related diabetes) and osteopenia (the forerunner for osteoperosis). Also, throughout the years I've contracted several strains of psudemonis, MRSA, and several others that I cannot remember right now. Most of them are resistant to antibiotics, however my lungs are doing very well right now. I have chronic pain every day now, but it is not debilitating. My CF has also started affecting my liver lately, but as long as I keep a close eye on it, it will probably not get serious.

That's all i can think of; I hope that is something like what you were looking for.

Mockingbird · Oct 21, 2007

I am 25 with CF in relatively good condition. I am still able to work full time, though it is much more difficult for me than healthy people. I am able to support myself financially, but only because I am still on my father's health insurance. They ruled me as someone with a disability or something so they cannot drop me unless I get married.

When I was born, I had congested lungs and pancreatic insufficiency (The two most common CF symptoms). When I was around 8, I got nasal polyps for the first time and had to have sinus surgury. They told me I would have to have repeat surgeries every five years, but i've only had to have one other one since then. When I was around 13, I had my first cleanout; my lung function had dropped really low and I needed a two-week course of antibiotics. At the time, my weight was also really low, and my doctor was considering putting me on a stomach tube. After the cleanout, however, my lungs improved greatly and so did my appetite. Around the age of 21, I was diagnosed with mild depression and first started having problems with chronic pain. About a year ago, I was diagnosed with glucose intolerance (the forerunner for CF related diabetes) and osteopenia (the forerunner for osteoperosis). Also, throughout the years I've contracted several strains of psudemonis, MRSA, and several others that I cannot remember right now. Most of them are resistant to antibiotics, however my lungs are doing very well right now. I have chronic pain every day now, but it is not debilitating. My CF has also started affecting my liver lately, but as long as I keep a close eye on it, it will probably not get serious.

That's all i can think of; I hope that is something like what you were looking for.

Mockingbird · Oct 21, 2007

I am 25 with CF in relatively good condition. I am still able to work full time, though it is much more difficult for me than healthy people. I am able to support myself financially, but only because I am still on my father's health insurance. They ruled me as someone with a disability or something so they cannot drop me unless I get married.

When I was born, I had congested lungs and pancreatic insufficiency (The two most common CF symptoms). When I was around 8, I got nasal polyps for the first time and had to have sinus surgury. They told me I would have to have repeat surgeries every five years, but i've only had to have one other one since then. When I was around 13, I had my first cleanout; my lung function had dropped really low and I needed a two-week course of antibiotics. At the time, my weight was also really low, and my doctor was considering putting me on a stomach tube. After the cleanout, however, my lungs improved greatly and so did my appetite. Around the age of 21, I was diagnosed with mild depression and first started having problems with chronic pain. About a year ago, I was diagnosed with glucose intolerance (the forerunner for CF related diabetes) and osteopenia (the forerunner for osteoperosis). Also, throughout the years I've contracted several strains of psudemonis, MRSA, and several others that I cannot remember right now. Most of them are resistant to antibiotics, however my lungs are doing very well right now. I have chronic pain every day now, but it is not debilitating. My CF has also started affecting my liver lately, but as long as I keep a close eye on it, it will probably not get serious.

That's all i can think of; I hope that is something like what you were looking for.

Mockingbird · Oct 21, 2007

I am 25 with CF in relatively good condition. I am still able to work full time, though it is much more difficult for me than healthy people. I am able to support myself financially, but only because I am still on my father's health insurance. They ruled me as someone with a disability or something so they cannot drop me unless I get married.

When I was born, I had congested lungs and pancreatic insufficiency (The two most common CF symptoms). When I was around 8, I got nasal polyps for the first time and had to have sinus surgury. They told me I would have to have repeat surgeries every five years, but i've only had to have one other one since then. When I was around 13, I had my first cleanout; my lung function had dropped really low and I needed a two-week course of antibiotics. At the time, my weight was also really low, and my doctor was considering putting me on a stomach tube. After the cleanout, however, my lungs improved greatly and so did my appetite. Around the age of 21, I was diagnosed with mild depression and first started having problems with chronic pain. About a year ago, I was diagnosed with glucose intolerance (the forerunner for CF related diabetes) and osteopenia (the forerunner for osteoperosis). Also, throughout the years I've contracted several strains of psudemonis, MRSA, and several others that I cannot remember right now. Most of them are resistant to antibiotics, however my lungs are doing very well right now. I have chronic pain every day now, but it is not debilitating. My CF has also started affecting my liver lately, but as long as I keep a close eye on it, it will probably not get serious.

That's all i can think of; I hope that is something like what you were looking for.

Mockingbird · Oct 21, 2007

I am 25 with CF in relatively good condition. I am still able to work full time, though it is much more difficult for me than healthy people. I am able to support myself financially, but only because I am still on my father's health insurance. They ruled me as someone with a disability or something so they cannot drop me unless I get married.

When I was born, I had congested lungs and pancreatic insufficiency (The two most common CF symptoms). When I was around 8, I got nasal polyps for the first time and had to have sinus surgury. They told me I would have to have repeat surgeries every five years, but i've only had to have one other one since then. When I was around 13, I had my first cleanout; my lung function had dropped really low and I needed a two-week course of antibiotics. At the time, my weight was also really low, and my doctor was considering putting me on a stomach tube. After the cleanout, however, my lungs improved greatly and so did my appetite. Around the age of 21, I was diagnosed with mild depression and first started having problems with chronic pain. About a year ago, I was diagnosed with glucose intolerance (the forerunner for CF related diabetes) and osteopenia (the forerunner for osteoperosis). Also, throughout the years I've contracted several strains of psudemonis, MRSA, and several others that I cannot remember right now. Most of them are resistant to antibiotics, however my lungs are doing very well right now. I have chronic pain every day now, but it is not debilitating. My CF has also started affecting my liver lately, but as long as I keep a close eye on it, it will probably not get serious.

That's all i can think of; I hope that is something like what you were looking for.

Alyssa · Oct 21, 2007

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 by 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 she was particularly concerned about the possibility of outliving her child.

*************
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. Below is some information about the three adults with CF that I know quite a bit about.....

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 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. 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 · Oct 21, 2007

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 by 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 she was particularly concerned about the possibility of outliving her child.

*************
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. Below is some information about the three adults with CF that I know quite a bit about.....

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 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. 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 · Oct 21, 2007

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 by 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 she was particularly concerned about the possibility of outliving her child.

*************
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. Below is some information about the three adults with CF that I know quite a bit about.....

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 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. 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 · Oct 21, 2007

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 by 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 she was particularly concerned about the possibility of outliving her child.

*************
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. Below is some information about the three adults with CF that I know quite a bit about.....

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 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. 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 · Oct 21, 2007

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 by 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 she was particularly concerned about the possibility of outliving her child.

*************
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. Below is some information about the three adults with CF that I know quite a bit about.....

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 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. 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.
***************

my daughter is 1 and has Cf please tell me some of your experiances

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