Need some positive thoughts

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Rebjane

Super Moderator
Kathryn,

Welcome to this site. I understand how you feel. I have two children, one 8 years old without CF and one 4 years old with CF. I found out my daughter had CF when I was pregnant with her. I could not stop crying. I was devastated, angry at everyone. Being pregnant is hard enough, then I was told my son(4 at the time could have CF , too). He was tested and does NOT have CF. While I was waiting for the test results, I thought I woudl just breakdown. I did not.

You are entitled to your feelings. Just know that your daughter who is 15 months may start to feel better now that she has the CF diagnosis. the proper treatment at a CF clinic may keep her healthier. She is still the same little girl.

My daughter with CF has a full and happy life. Right now she is at nursery school for the morning. she goes to dance classes, birthday parties( in fact she just got an invitation to one today). She has best friends, she is social, outgoing and really one of the leaders of the pack of her friends.

We do treatments to keep my daughter healthy. Breathing treatments, VEST(chest physical therapy), enzymes with food. She is growing and having a fulfillling life. It may not be the road I would have picked for our family or our daughter but we are making the best of it.

Please feel free to always ask questions

Take care of yourself

Rebecca
 
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Emily65Roses

New member
I just wanted to add to what BigBee Mary said... Your child is getting really good meds from day one. That's a really good way to start. I didn't go on nebs until I was 9, because I was born back in 1984. That was a long time ago, medically speaking. Your child has a good chance of doing better than most of us.

And I hope this helps:
I was born in 84, as I said. My parents were told not to expect to see me grow to be 18. I am now 23, still with 70% of my lung function (you aren't really <b>failing</b> until you get down to and stay at 30%-ish or below). I'm a college student, engaged to be married in a few years, etc etc. I'll probably croak in my 30s, but that's roughly twice as much as my parents were told to expect when I was born. So you're told to expect 35... I suspect it'll get higher as your child grows.

It's not a bed of roses, I wouldn't lie to you about that. Haha. But it has very high chances of being a lot better for you and yours than most of the adults floating around the site.
 
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Emily65Roses

New member
I just wanted to add to what BigBee Mary said... Your child is getting really good meds from day one. That's a really good way to start. I didn't go on nebs until I was 9, because I was born back in 1984. That was a long time ago, medically speaking. Your child has a good chance of doing better than most of us.

And I hope this helps:
I was born in 84, as I said. My parents were told not to expect to see me grow to be 18. I am now 23, still with 70% of my lung function (you aren't really <b>failing</b> until you get down to and stay at 30%-ish or below). I'm a college student, engaged to be married in a few years, etc etc. I'll probably croak in my 30s, but that's roughly twice as much as my parents were told to expect when I was born. So you're told to expect 35... I suspect it'll get higher as your child grows.

It's not a bed of roses, I wouldn't lie to you about that. Haha. But it has very high chances of being a lot better for you and yours than most of the adults floating around the site.
 
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Emily65Roses

New member
I just wanted to add to what BigBee Mary said... Your child is getting really good meds from day one. That's a really good way to start. I didn't go on nebs until I was 9, because I was born back in 1984. That was a long time ago, medically speaking. Your child has a good chance of doing better than most of us.

And I hope this helps:
I was born in 84, as I said. My parents were told not to expect to see me grow to be 18. I am now 23, still with 70% of my lung function (you aren't really <b>failing</b> until you get down to and stay at 30%-ish or below). I'm a college student, engaged to be married in a few years, etc etc. I'll probably croak in my 30s, but that's roughly twice as much as my parents were told to expect when I was born. So you're told to expect 35... I suspect it'll get higher as your child grows.

It's not a bed of roses, I wouldn't lie to you about that. Haha. But it has very high chances of being a lot better for you and yours than most of the adults floating around the site.
 
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Alyssa

New member
Lola,

I'm so sorry to hear about the diagnosis. But please do not get too hung up on the age thing -- that is a median number not an average -- it's a math thing -- it doesn't mean you should be preparing to loose her at age 30.

It is true that kids that are born now have a better shot at living healthier, longer lives than those diagnosed years ago.

My daughter is 18 years old and her lung function is "above" normal. My son is almost 21 and is just a couple points "below" normal (his FEV1 is 80 -- normal is 85)

I wish you the best - please keep us posted with how you are doing.
 
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Alyssa

New member
Lola,

I'm so sorry to hear about the diagnosis. But please do not get too hung up on the age thing -- that is a median number not an average -- it's a math thing -- it doesn't mean you should be preparing to loose her at age 30.

It is true that kids that are born now have a better shot at living healthier, longer lives than those diagnosed years ago.

My daughter is 18 years old and her lung function is "above" normal. My son is almost 21 and is just a couple points "below" normal (his FEV1 is 80 -- normal is 85)

I wish you the best - please keep us posted with how you are doing.
 
A

Alyssa

New member
Lola,

I'm so sorry to hear about the diagnosis. But please do not get too hung up on the age thing -- that is a median number not an average -- it's a math thing -- it doesn't mean you should be preparing to loose her at age 30.

It is true that kids that are born now have a better shot at living healthier, longer lives than those diagnosed years ago.

My daughter is 18 years old and her lung function is "above" normal. My son is almost 21 and is just a couple points "below" normal (his FEV1 is 80 -- normal is 85)

I wish you the best - please keep us posted with how you are doing.
 
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lola

New member
Hi All, Thankyou so much for your posts. It really has helped me. I am based at Boothall Hospital in Manchester, and have meet the team who all seem like really good people. This diagnosis, like many of you has just come as a complete and utter shock to us, Lola has not been ill, yes, she is a petite little thing and has smelly phoos, but doctors gave the strong indication she had a food intolerance to gluten - they bearly touched on cistic fibrosis other than they were testing for that and lots of other stuff to rule it out- so when we were called back for the results , well i am sure like many of you it was the worst day of our lifes. I havnt slept propeley since finding out 3 days ago and have a constant sick feeling in the pit of my stomach, i am hoping these feeling will gradually fade away once everything settles down. I feel like a week ago i had the perfect life and now its been blown apart. Dont get me wrong, Lola is still perfect to me , she is extra special now - i suppose things are just sent to test you- and th way lola is i am sure she will take this in her stride!its me and her dad that are nervous wrecks! every slight cough, sniffle or chesty noise i am now on pins - but again i suppose that will calm down in time. Thanks again all, you have all some how made it all the more bearable.
 
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lola

New member
Hi All, Thankyou so much for your posts. It really has helped me. I am based at Boothall Hospital in Manchester, and have meet the team who all seem like really good people. This diagnosis, like many of you has just come as a complete and utter shock to us, Lola has not been ill, yes, she is a petite little thing and has smelly phoos, but doctors gave the strong indication she had a food intolerance to gluten - they bearly touched on cistic fibrosis other than they were testing for that and lots of other stuff to rule it out- so when we were called back for the results , well i am sure like many of you it was the worst day of our lifes. I havnt slept propeley since finding out 3 days ago and have a constant sick feeling in the pit of my stomach, i am hoping these feeling will gradually fade away once everything settles down. I feel like a week ago i had the perfect life and now its been blown apart. Dont get me wrong, Lola is still perfect to me , she is extra special now - i suppose things are just sent to test you- and th way lola is i am sure she will take this in her stride!its me and her dad that are nervous wrecks! every slight cough, sniffle or chesty noise i am now on pins - but again i suppose that will calm down in time. Thanks again all, you have all some how made it all the more bearable.
 
L

lola

New member
Hi All, Thankyou so much for your posts. It really has helped me. I am based at Boothall Hospital in Manchester, and have meet the team who all seem like really good people. This diagnosis, like many of you has just come as a complete and utter shock to us, Lola has not been ill, yes, she is a petite little thing and has smelly phoos, but doctors gave the strong indication she had a food intolerance to gluten - they bearly touched on cistic fibrosis other than they were testing for that and lots of other stuff to rule it out- so when we were called back for the results , well i am sure like many of you it was the worst day of our lifes. I havnt slept propeley since finding out 3 days ago and have a constant sick feeling in the pit of my stomach, i am hoping these feeling will gradually fade away once everything settles down. I feel like a week ago i had the perfect life and now its been blown apart. Dont get me wrong, Lola is still perfect to me , she is extra special now - i suppose things are just sent to test you- and th way lola is i am sure she will take this in her stride!its me and her dad that are nervous wrecks! every slight cough, sniffle or chesty noise i am now on pins - but again i suppose that will calm down in time. Thanks again all, you have all some how made it all the more bearable.
 
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amysmom

New member
Our daughter, Amy is 25 years old. She recently graduated from USC and has 2 bachelor's degrees. She's working full time as a sales rep (making quite a bit of money) for a pharmaceutical company. She lives by herself, has a wonderful boyfriend and has only been in the hospital 3 times for CF.
I think with all the new and existing medications, your daughter will be very healthy and CF will be a minor problem to deal with. (Gene therapy to correct the problem is extremely likely in the next 5 years also!) It took us a while to get over the shock and pain of the diagnosis, but once we incorporated the medicine and physical treatments into our everyday schedule, our life got back to normal and Amy grew up pretty much the same as her friends. I think if you're dilligent about doing the treatments every day, your daughter will be very healthy and CF will only be a minor part of her life.
 
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amysmom

New member
Our daughter, Amy is 25 years old. She recently graduated from USC and has 2 bachelor's degrees. She's working full time as a sales rep (making quite a bit of money) for a pharmaceutical company. She lives by herself, has a wonderful boyfriend and has only been in the hospital 3 times for CF.
I think with all the new and existing medications, your daughter will be very healthy and CF will be a minor problem to deal with. (Gene therapy to correct the problem is extremely likely in the next 5 years also!) It took us a while to get over the shock and pain of the diagnosis, but once we incorporated the medicine and physical treatments into our everyday schedule, our life got back to normal and Amy grew up pretty much the same as her friends. I think if you're dilligent about doing the treatments every day, your daughter will be very healthy and CF will only be a minor part of her life.
 
A

amysmom

New member
Our daughter, Amy is 25 years old. She recently graduated from USC and has 2 bachelor's degrees. She's working full time as a sales rep (making quite a bit of money) for a pharmaceutical company. She lives by herself, has a wonderful boyfriend and has only been in the hospital 3 times for CF.
I think with all the new and existing medications, your daughter will be very healthy and CF will be a minor problem to deal with. (Gene therapy to correct the problem is extremely likely in the next 5 years also!) It took us a while to get over the shock and pain of the diagnosis, but once we incorporated the medicine and physical treatments into our everyday schedule, our life got back to normal and Amy grew up pretty much the same as her friends. I think if you're dilligent about doing the treatments every day, your daughter will be very healthy and CF will only be a minor part of her life.
 
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beleache

New member
Hi Kathryn, welcome to the site, it's a great place for support/information. like melissa said, keep track of everything, ask questions, get information, stay on top of everything. it's important to have a good support system. i was diagnosed later in life, had many problems growing up as did my sister (also had c/f, she passed at the age of 50 from breast cancer) most of all try to have hope, there is so much more the doctors know now.... God Bless you and your little one........ Joni... 55 y/o f w c/f mother of 4 sons and one Grandson !!!
 
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beleache

New member
Hi Kathryn, welcome to the site, it's a great place for support/information. like melissa said, keep track of everything, ask questions, get information, stay on top of everything. it's important to have a good support system. i was diagnosed later in life, had many problems growing up as did my sister (also had c/f, she passed at the age of 50 from breast cancer) most of all try to have hope, there is so much more the doctors know now.... God Bless you and your little one........ Joni... 55 y/o f w c/f mother of 4 sons and one Grandson !!!
 
B

beleache

New member
Hi Kathryn, welcome to the site, it's a great place for support/information. like melissa said, keep track of everything, ask questions, get information, stay on top of everything. it's important to have a good support system. i was diagnosed later in life, had many problems growing up as did my sister (also had c/f, she passed at the age of 50 from breast cancer) most of all try to have hope, there is so much more the doctors know now.... God Bless you and your little one........ Joni... 55 y/o f w c/f mother of 4 sons and one Grandson !!!
 
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westonsmom

New member
Welcome. Take it one day at a time. You can't focus on the thought of death or it will overwhelm you and will teach your daughter to not live her life. Focus on the positives even if it is hard. The research, new meds, and advances. My son is also 15 months old. I do a lot of fundraising. It gives me a purpose and helps me be in some control over the diagnosis. Good luck with your baby. Keep good thoughts!
 
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