I am just curious because it is bothering me. How old were some of you when you found out that CF meant a shorter life expectancy? How did you find out and did it affect your personality? My little one is only 6 right now and is the brightest little ray of sunshine you will ever meet, even after all she goes through she is just amazing. I am scared when she finds out that it will scare her, and change the way she looks at life. When the time comes I want to be prepared, just not quite sure how to handle it. I know it is probably still a ways off, but it weighs on my mind. I hope my question isn't too personal, just don't know what to expect and I don't want to goof up.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
when your child finds out the median age
- Thread starter JENNYC
- Start date
I am just curious because it is bothering me. How old were some of you when you found out that CF meant a shorter life expectancy? How did you find out and did it affect your personality? My little one is only 6 right now and is the brightest little ray of sunshine you will ever meet, even after all she goes through she is just amazing. I am scared when she finds out that it will scare her, and change the way she looks at life. When the time comes I want to be prepared, just not quite sure how to handle it. I know it is probably still a ways off, but it weighs on my mind. I hope my question isn't too personal, just don't know what to expect and I don't want to goof up.
I am just curious because it is bothering me. How old were some of you when you found out that CF meant a shorter life expectancy? How did you find out and did it affect your personality? My little one is only 6 right now and is the brightest little ray of sunshine you will ever meet, even after all she goes through she is just amazing. I am scared when she finds out that it will scare her, and change the way she looks at life. When the time comes I want to be prepared, just not quite sure how to handle it. I know it is probably still a ways off, but it weighs on my mind. I hope my question isn't too personal, just don't know what to expect and I don't want to goof up.<BR>
<P>Hello,</P>
<P> </P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible. I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P> </P>
<P>Dave, 36 w/cf</P>
<P> </P>
<P> </P>
<P> </P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible. I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P> </P>
<P>Dave, 36 w/cf</P>
<P> </P>
<P> </P>
<P>Hello,</P>
<P></P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible.I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P></P>
<P>Dave, 36 w/cf</P>
<P></P>
<P></P>
<P></P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible.I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P></P>
<P>Dave, 36 w/cf</P>
<P></P>
<P></P>
<P><BR>Hello,</P>
<P></P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible.I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P></P>
<P>Dave, 36 w/cf</P>
<P></P>
<P></P>
<P></P>
<P>She is only 6 so it is very hard to tell how she will react. I was diagnosed at 22 and it really didn't affect me. when I went for my first appointment at CF centre I just wanted to know what I had to do to take of myself, and I tried to live my life as normal as possible.I am 36 now and when I was diagnosed the life expectancy was early 20's. </P>
<P></P>
<P>Dave, 36 w/cf</P>
<P></P>
<P></P>
I was aware at a very young age that CF could cause you to die. One of my Dad's best friends died of CF just a few years after I was born. My parents told me about his death but explained that he and I weren't the same. He was exposed to more dust growing up, he didn't have access to the same treatments because when he was young they weren't around yet. I think my parents did their best to not let CF scare me. It actually wasn't until I found this cite when I was 15 that I realized how bad CF could be and that did change how I felt about life. Since this disease varies so much, you might consider not telling her the MEDIAN life expectancy.
I was aware at a very young age that CF could cause you to die. One of my Dad's best friends died of CF just a few years after I was born. My parents told me about his death but explained that he and I weren't the same. He was exposed to more dust growing up, he didn't have access to the same treatments because when he was young they weren't around yet. I think my parents did their best to not let CF scare me. It actually wasn't until I found this cite when I was 15 that I realized how bad CF could be and that did change how I felt about life. Since this disease varies so much, you might consider not telling her the MEDIAN life expectancy.
I was aware at a very young age that CF could cause you to die. One of my Dad's best friends died of CF just a few years after I was born. My parents told me about his death but explained that he and I weren't the same. He was exposed to more dust growing up, he didn't have access to the same treatments because when he was young they weren't around yet. I think my parents did their best to not let CF scare me. It actually wasn't until I found this cite when I was 15 that I realized how bad CF could be and that did change how I felt about life. Since this disease varies so much, you might consider not telling her the MEDIAN life expectancy.
S
Swallowtail66
Guest
My children were 13 and 6 when diagnosed. The 13 yr-old did not handle it well at all. She was self-destructive and noncompliant for a long while. At 21 she is dealing with it better. The 6 yr-old just accepted it as her life. At 14 she deals very well. She understands that CF can shorten your life, but that you can take really good care of yourself and beat the odds. We also have strong faith that we will not die until God is ready for us and we won't live any longer than He wants. She works hard to be healthy and we leave the age of death up to God.
S
Swallowtail66
Guest
My children were 13 and 6 when diagnosed. The 13 yr-old did not handle it well at all. She was self-destructive and noncompliant for a long while. At 21 she is dealing with it better. The 6 yr-old just accepted it as her life. At 14 she deals very well. She understands that CF can shorten your life, but that you can take really good care of yourself and beat the odds. We also have strong faith that we will not die until God is ready for us and we won't live any longer than He wants. She works hard to be healthy and we leave the age of death up to God.
S
Swallowtail66
Guest
<BR>My children were 13 and 6 when diagnosed. The 13 yr-old did not handle it well at all. She was self-destructive and noncompliant for a long while. At 21 she is dealing with it better. The 6 yr-old just accepted it as her life. At 14 she deals very well. She understands that CF can shorten your life, but that you can take really good care of yourself and beat the odds. We also have strong faith that we will not die until God is ready for us and we won't live any longer than He wants. She works hard to be healthy and we leave the age of death up to God.
grandmaof8
New member
I'm 59 and was just diagnosed 6 yrs ago. I've always had lung infections but was never tested for CF. My PFT is at 26. Just started using oxygen "as needed" this week. Other than that have a normal life, except for all the time it takes for the daily therapy routine. I have a very supportive husband and family and 8 wonderful grandkids!<br><br>Don't worry too much about median age. Everyone is different. Just enjoy life now!<br>
grandmaof8
New member
I'm 59 and was just diagnosed 6 yrs ago. I've always had lung infections but was never tested for CF. My PFT is at 26. Just started using oxygen "as needed" this week. Other than that have a normal life, except for all the time it takes for the daily therapy routine. I have a very supportive husband and family and 8 wonderful grandkids!<br><br>Don't worry too much about median age. Everyone is different. Just enjoy life now!<br>
grandmaof8
New member
I'm 59 and was just diagnosed 6 yrs ago. I've always had lung infections but was never tested for CF. My PFT is at 26. Just started using oxygen "as needed" this week. Other than that have a normal life, except for all the time it takes for the daily therapy routine. I have a very supportive husband and family and 8 wonderful grandkids!<br><br>Don't worry too much about median age. Everyone is different. Just enjoy life now!<br>
I didnt ever tell any of my kids that they might live til (5, 13, teenage, 30 - these are the life expectancy changes since my first was diagnosed 31.5 years ago), but what I did tell them at an appropriate time and age is that CF CAN make some people very sick, and some people die from it.
<br>
<br>My kids didnt grow up with a dark cloud over their lives, they grew up with hope that they would have a normal life. They are currently aged 32, 30, 15 & 13 (non cf). All of them are really well. My daughter (30 almost) has a child who is 18 mths old and just ran in a 14 k marathon (1hr 38m).
<br>
<br>My oldest is on the open lable Vertex 770 and has been in the trial for the last couple of years. He hasnt been sick at all since starting, takes no Creon and has not even had a cold since starting the 770. His FEV1 rose from 69% to somewhere over 85%.
<br>
<br>My point is (and I also think the above posters) that every person with CF is different, no one knows the future. There are some incredibily exciting drugs almost on the market RIGHT NOW that are already changing people's lives.
<br>
<br>Dont weigh your child down with some age expectancy, make sure they understand that they need to work hard at keeping fit and looking after themselves.
<br><br>
<br>
<br>
<br>My kids didnt grow up with a dark cloud over their lives, they grew up with hope that they would have a normal life. They are currently aged 32, 30, 15 & 13 (non cf). All of them are really well. My daughter (30 almost) has a child who is 18 mths old and just ran in a 14 k marathon (1hr 38m).
<br>
<br>My oldest is on the open lable Vertex 770 and has been in the trial for the last couple of years. He hasnt been sick at all since starting, takes no Creon and has not even had a cold since starting the 770. His FEV1 rose from 69% to somewhere over 85%.
<br>
<br>My point is (and I also think the above posters) that every person with CF is different, no one knows the future. There are some incredibily exciting drugs almost on the market RIGHT NOW that are already changing people's lives.
<br>
<br>Dont weigh your child down with some age expectancy, make sure they understand that they need to work hard at keeping fit and looking after themselves.
<br><br>
<br>
I didnt ever tell any of my kids that they might live til (5, 13, teenage, 30 - these are the life expectancy changes since my first was diagnosed 31.5 years ago), but what I did tell them at an appropriate time and age is that CF CAN make some people very sick, and some people die from it.
<br>
<br>My kids didnt grow up with a dark cloud over their lives, they grew up with hope that they would have a normal life. They are currently aged 32, 30, 15 & 13 (non cf). All of them are really well. My daughter (30 almost) has a child who is 18 mths old and just ran in a 14 k marathon (1hr 38m).
<br>
<br>My oldest is on the open lable Vertex 770 and has been in the trial for the last couple of years. He hasnt been sick at all since starting, takes no Creon and has not even had a cold since starting the 770. His FEV1 rose from 69% to somewhere over 85%.
<br>
<br>My point is (and I also think the above posters) that every person with CF is different, no one knows the future. There are some incredibily exciting drugs almost on the market RIGHT NOW that are already changing people's lives.
<br>
<br>Dont weigh your child down with some age expectancy, make sure they understand that they need to work hard at keeping fit and looking after themselves.
<br><br>
<br>
<br>
<br>My kids didnt grow up with a dark cloud over their lives, they grew up with hope that they would have a normal life. They are currently aged 32, 30, 15 & 13 (non cf). All of them are really well. My daughter (30 almost) has a child who is 18 mths old and just ran in a 14 k marathon (1hr 38m).
<br>
<br>My oldest is on the open lable Vertex 770 and has been in the trial for the last couple of years. He hasnt been sick at all since starting, takes no Creon and has not even had a cold since starting the 770. His FEV1 rose from 69% to somewhere over 85%.
<br>
<br>My point is (and I also think the above posters) that every person with CF is different, no one knows the future. There are some incredibily exciting drugs almost on the market RIGHT NOW that are already changing people's lives.
<br>
<br>Dont weigh your child down with some age expectancy, make sure they understand that they need to work hard at keeping fit and looking after themselves.
<br><br>
<br>