There is plenty of hope. I am 39 with an 8 year old daughter and a husband of 13 years. I have a master's degree and I have my own speech therapy practice. No, I don't have an "easy" or "mild" mutuation. There really is no such thing. I just had a wonderful mother full of hope who never let CF become who I was and never put a lid on my dreams. Look for hope and chase off fear, fear is so counterproductive and is a "useless" force<img src="i/expressions/face-icon-small-smile.gif" border="0"> Be that hope for your child until they are old enough to be that for themselves!
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I'm desperate for hope
- Thread starter nlwlrandall
- Start date
There is plenty of hope. I am 39 with an 8 year old daughter and a husband of 13 years. I have a master's degree and I have my own speech therapy practice. No, I don't have an "easy" or "mild" mutuation. There really is no such thing. I just had a wonderful mother full of hope who never let CF become who I was and never put a lid on my dreams. Look for hope and chase off fear, fear is so counterproductive and is a "useless" force<img src="i/expressions/face-icon-small-smile.gif" border="0"> Be that hope for your child until they are old enough to be that for themselves!
There is plenty of hope. I am 39 with an 8 year old daughter and a husband of 13 years. I have a master's degree and I have my own speech therapy practice. No, I don't have an "easy" or "mild" mutuation. There really is no such thing. I just had a wonderful mother full of hope who never let CF become who I was and never put a lid on my dreams. Look for hope and chase off fear, fear is so counterproductive and is a "useless" force<img src="i/expressions/face-icon-small-smile.gif" border="0"> Be that hope for your child until they are old enough to be that for themselves!
There is plenty of hope. I am 39 with an 8 year old daughter and a husband of 13 years. I have a master's degree and I have my own speech therapy practice. No, I don't have an "easy" or "mild" mutuation. There really is no such thing. I just had a wonderful mother full of hope who never let CF become who I was and never put a lid on my dreams. Look for hope and chase off fear, fear is so counterproductive and is a "useless" force<img src="i/expressions/face-icon-small-smile.gif" border="0"> Be that hope for your child until they are old enough to be that for themselves!
There is plenty of hope. I am 39 with an 8 year old daughter and a husband of 13 years. I have a master's degree and I have my own speech therapy practice. No, I don't have an "easy" or "mild" mutuation. There really is no such thing. I just had a wonderful mother full of hope who never let CF become who I was and never put a lid on my dreams. Look for hope and chase off fear, fear is so counterproductive and is a "useless" force<img src="i/expressions/face-icon-small-smile.gif" border="0"> Be that hope for your child until they are old enough to be that for themselves!
Skye, my daughter has been sick since she was a year old, and finally we were sent to a pulmonoligist, at 11 years old. My baby girl just has a sweat test. The results were 31, whatever that may mean for us. I have really been through a rollercoaster of emotions, and what you just said is so beautiful! I want you to know that it touched me, and I'm sure it will Laura also. Being a mother is the toughest and most rewarding job all at the same time. We want to "kiss it and make everything all better", and it hurts us when we can't. Mothers never give up. It sounds like your mother was one of the best. Take care, T
Skye, my daughter has been sick since she was a year old, and finally we were sent to a pulmonoligist, at 11 years old. My baby girl just has a sweat test. The results were 31, whatever that may mean for us. I have really been through a rollercoaster of emotions, and what you just said is so beautiful! I want you to know that it touched me, and I'm sure it will Laura also. Being a mother is the toughest and most rewarding job all at the same time. We want to "kiss it and make everything all better", and it hurts us when we can't. Mothers never give up. It sounds like your mother was one of the best. Take care, T
Skye, my daughter has been sick since she was a year old, and finally we were sent to a pulmonoligist, at 11 years old. My baby girl just has a sweat test. The results were 31, whatever that may mean for us. I have really been through a rollercoaster of emotions, and what you just said is so beautiful! I want you to know that it touched me, and I'm sure it will Laura also. Being a mother is the toughest and most rewarding job all at the same time. We want to "kiss it and make everything all better", and it hurts us when we can't. Mothers never give up. It sounds like your mother was one of the best. Take care, T
Skye, my daughter has been sick since she was a year old, and finally we were sent to a pulmonoligist, at 11 years old. My baby girl just has a sweat test. The results were 31, whatever that may mean for us. I have really been through a rollercoaster of emotions, and what you just said is so beautiful! I want you to know that it touched me, and I'm sure it will Laura also. Being a mother is the toughest and most rewarding job all at the same time. We want to "kiss it and make everything all better", and it hurts us when we can't. Mothers never give up. It sounds like your mother was one of the best. Take care, T
Skye, my daughter has been sick since she was a year old, and finally we were sent to a pulmonoligist, at 11 years old. My baby girl just has a sweat test. The results were 31, whatever that may mean for us. I have really been through a rollercoaster of emotions, and what you just said is so beautiful! I want you to know that it touched me, and I'm sure it will Laura also. Being a mother is the toughest and most rewarding job all at the same time. We want to "kiss it and make everything all better", and it hurts us when we can't. Mothers never give up. It sounds like your mother was one of the best. Take care, T
KaiserWilly
New member
Laura asked "So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?"
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
KaiserWilly
New member
Laura asked "So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?"
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
KaiserWilly
New member
Laura asked "So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?"
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
KaiserWilly
New member
Laura asked "So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?"
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
KaiserWilly
New member
Laura asked "So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?"
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC
Well, well, well. I may be the person you want to talk to for what little I know about being a CF patient. Don't get me wrong I have been a lung disease patient for 47 years since it was only last November that I learned I have CF. I am still up and around (slowly) due to the fact that one of my CF genes was full strength and one of my CF genes was a weaker strain.
I can not tell you how many times I have been told "You should be dead!!!" But enough about my in-laws. LOL (laugh often because it keeps us alive)
But seriously, many well meaning but unthinking medical professionals have assumed that everybody dies young and for that brief moment either think I am a liar or freak of nature. According to my people at UAB, many more people are living long lives with CF. In a year and a half I will be FIFTY years old. I doubled the life expectancy of the old info. Be glad that if your child HAD to get CF that it is now at this wonderful time of transition and hope for a cure or treatment of the CF good enough to look like a cure will come soon. In 1959 they didn't have so much to work with. Also, both my parents smoked in the home which didn't help but none of my wonderful doctors (first forty years) had a clue why I was sick. After reading two entry level books on CF there was no reason that I should not have been checked at an early age other than because of one gene not being that bad, I just was not sick enough.
So to answer your question, Is it possible to live a relatively normal life with CF if your genes are not too bad, I think <b>I would say yes</b>. Oh <b>I have two kids and two grandchildren (ALL CF FREE!!!!) </b>Since I don't consider 50 very old yet I can't really guarantee you can grow OOOOOOld with this disease but I can say some get past the halfway point with style if they just take care of what was left for them to work with. Good luck and take a breath, your baby will have a much stronger chance than many have in the past.
Protect your child "without suffocating them".
I encourage you to be a silent (for the most part) guardian by eliminating needless hazards but allow your child to experience some of the hazards of regular life with you quietly reviewing your plans in case of a major castrophy.
It is good to teach children the value of preparation while teaching them to independent for their own health as they reach maturity.
I just realized how paternalistic that sounded but I guess I thought I was at work for a second. I not only lived to almost fifty, I did construction work for 12 years (lots of Primatene...don't do it) Later I earned three college degrees. BA in psychology and M.Ed and Ed.S. in Counseling.
Okay so I am a professional counselor...<b><u>I still have CF and I am still alive</u></b>. I think the student loan people have "guardian agents" around me so I don't die or become disabled. If you have had or currently have a student loan that is due you will certainly understand.
Take care,
Kaiser Willy,
Charles Hicks LPC