New to the board. I am a father of three. My daughter was born August 3. We have recently found out my daughter may have a strand of CF. We are going for testing tomorrow at CHOPS. I just want to know what to expect when we get there. I somehow feel guilty as I am a carrier of this disease.
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I'm desperate for hope
- Thread starter nlwlrandall
- Start date
New to the board. I am a father of three. My daughter was born August 3. We have recently found out my daughter may have a strand of CF. We are going for testing tomorrow at CHOPS. I just want to know what to expect when we get there. I somehow feel guilty as I am a carrier of this disease.
New to the board. I am a father of three. My daughter was born August 3. We have recently found out my daughter may have a strand of CF. We are going for testing tomorrow at CHOPS. I just want to know what to expect when we get there. I somehow feel guilty as I am a carrier of this disease.
New to the board. I am a father of three. My daughter was born August 3. We have recently found out my daughter may have a strand of CF. We are going for testing tomorrow at CHOPS. I just want to know what to expect when we get there. I somehow feel guilty as I am a carrier of this disease.
New to the board. I am a father of three. My daughter was born August 3. We have recently found out my daughter may have a strand of CF. We are going for testing tomorrow at CHOPS. I just want to know what to expect when we get there. I somehow feel guilty as I am a carrier of this disease.
lightNlife
New member
Hi NY2473. Please don't feel guilty about being a carrier. It's just once of those things. Yes, CF is a scary thing to come to terms with, but there is SO MUCH that can be done for kids with CF these days. When I was born, the only info my parents had was a pamphlet. It wasn't until I was in my early teens that I got to benefit from IV antibiotic therapy, mucus clearance exercises, even the preventive care measures.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
lightNlife
New member
Hi NY2473. Please don't feel guilty about being a carrier. It's just once of those things. Yes, CF is a scary thing to come to terms with, but there is SO MUCH that can be done for kids with CF these days. When I was born, the only info my parents had was a pamphlet. It wasn't until I was in my early teens that I got to benefit from IV antibiotic therapy, mucus clearance exercises, even the preventive care measures.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
lightNlife
New member
Hi NY2473. Please don't feel guilty about being a carrier. It's just once of those things. Yes, CF is a scary thing to come to terms with, but there is SO MUCH that can be done for kids with CF these days. When I was born, the only info my parents had was a pamphlet. It wasn't until I was in my early teens that I got to benefit from IV antibiotic therapy, mucus clearance exercises, even the preventive care measures.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
lightNlife
New member
Hi NY2473. Please don't feel guilty about being a carrier. It's just once of those things. Yes, CF is a scary thing to come to terms with, but there is SO MUCH that can be done for kids with CF these days. When I was born, the only info my parents had was a pamphlet. It wasn't until I was in my early teens that I got to benefit from IV antibiotic therapy, mucus clearance exercises, even the preventive care measures.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
lightNlife
New member
Hi NY2473. Please don't feel guilty about being a carrier. It's just once of those things. Yes, CF is a scary thing to come to terms with, but there is SO MUCH that can be done for kids with CF these days. When I was born, the only info my parents had was a pamphlet. It wasn't until I was in my early teens that I got to benefit from IV antibiotic therapy, mucus clearance exercises, even the preventive care measures.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
As you are thrown into the world of CF, just remember that not all information applies to every case. I am a living, breathing example of that. I was not expected to live to my 10th birthday. I just celebrated my 27th birthday, I've been married, have a great job, and have learned how not to let CF rob me of hope.
I'll be praying that you can find some hope as well. This site is a great place for that. There are so many people who know what it's like to stand where you are, looking at the world through utter stupor, wondering how this terrible disease landed smack dab in the middle of YOUR world. If you find yourself too overwhelmed, even with the outpouring of support on this site, please don't be ashamed to look into some grief counseling.
My thoughts and prayers are with you. If there is ever ANYTHING I can do to uplift or encourage, please don't be afraid to ask.
With Hope,
Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://educatedguesser.blogspot.com
">http://educatedguesser.blogspot.com
</a>
Need something spiritually refreshing? Take a dip in a Pool of Grace.
lightNlife
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ny2473</b></i>
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
lightNlife
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ny2473</b></i>
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
lightNlife
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ny2473</b></i>
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote></div>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
lightNlife
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ny2473</b></i>
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
lightNlife
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ny2473</b></i>
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.
Thank you so much and Happy Birthday.I just felt helpless.This poor little girl did not ask for this.</end quote>
Helpless is a common feeling. That will subside once you learn more about how to maintain good health and make the most of preventing infection. It can be done. In time you'll learn what it means to "live with" CF and not feel as though your loved one is "dying of" CF. You'll get there. You've got all of us.