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Double Delta F508

M

mneville

Guest
My son is still young- almost three years old. He is a Double Delta and doing awesome! I am very curious to read people's responses b/c I get sick of hearing how this genetic combo is the worst.
Megan
 
M

mneville

Guest
My son is still young- almost three years old. He is a Double Delta and doing awesome! I am very curious to read people's responses b/c I get sick of hearing how this genetic combo is the worst.
Megan
 
M

mneville

Guest
My son is still young- almost three years old. He is a Double Delta and doing awesome! I am very curious to read people's responses b/c I get sick of hearing how this genetic combo is the worst.
Megan
 
M

mneville

Guest
My son is still young- almost three years old. He is a Double Delta and doing awesome! I am very curious to read people's responses b/c I get sick of hearing how this genetic combo is the worst.
Megan
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
W

Wheezie

New member
I'm a double delta too! I'm 29 and my most recent FEV1 was 34%. I was not diagnosed until I was 11 though, so I missed out on a lot of preventative maintenance. Apparently I HAD a "mild" case too. Then I lived in denial for a few years (I mean, puberty AND a CF diagnosis all at once? How much worse can it get for a kid who just wants to be like everyone else?) so I refused to do treatments, take pills, etc. It took me several years to come to terms with my CF and I was definitely not good to myself during that time. Wish I knew then what I know now...well I DID know it then, I just didn't have the capacity to understand what a huge impact my actions (or lack thereof) would have on the rest of my life (which, by the way, is one of the reasons why I don't think children should be tried as adults, but I digress...)
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
C

coltsfan715

New member
*Raises Hand*

Oh Oh Oh I am Double DF508. I was diagnosed on my first birthday. I'll be 25 next month and overall my health was stable in the 60-70% FEV1 range all through my teens til I was diagnosed with diabetes at 17, then things started to go downhill.

Spent several years from 18-22 struggling to maintain about 40% lung function then had a partial lung collapse due to a blockage/mucus plug type thing at 23 and never really recovered. I also had my gallbladder removed at around the age of 22.

I began to really decline at the last half of 2006. I started using Oxygen in Dec 2006. I also started the process for lung transplant Dec 2006 at 24. Had my first sinus surgery in Jan 2007. I was listed for Transplant in March 2007 and was Transplanted May 2007 at 24. I went downhill VERY fast once I started to really decline took about 8 months. Seriously I asked my doctor about transplant August 2006 and he told me I was years away from needing it - I just felt like something was coming and it wasn't going to be good. I changed docs and within 1 month started to get really sick and started the process for transplant at that time. I am doing wonderfully now though and getting better everyday.


Take Care,

Lindsey
 
J

JazzysMom

New member
I have DDF508 and I am 39 years old. In April of this year my FEV1 was 33%. My health for the most part held its on. I didnt do treatments at home until after my daughter was born when I was 30 years old. My life consisted of enzymes & occaisional hospital admits, but I did not comply with home care.

I have seen my health decline much more since age 30. It might have been in part from being a mom, not taking care of myself over the years or its just the natural progression. When I have exacerbations I am usually in need of O2 & my sugars go haywire. When things are stable I dont have issues with either, but I do have everything for both at home should something arise.
 
J

JazzysMom

New member
I have DDF508 and I am 39 years old. In April of this year my FEV1 was 33%. My health for the most part held its on. I didnt do treatments at home until after my daughter was born when I was 30 years old. My life consisted of enzymes & occaisional hospital admits, but I did not comply with home care.

I have seen my health decline much more since age 30. It might have been in part from being a mom, not taking care of myself over the years or its just the natural progression. When I have exacerbations I am usually in need of O2 & my sugars go haywire. When things are stable I dont have issues with either, but I do have everything for both at home should something arise.
 
J

JazzysMom

New member
I have DDF508 and I am 39 years old. In April of this year my FEV1 was 33%. My health for the most part held its on. I didnt do treatments at home until after my daughter was born when I was 30 years old. My life consisted of enzymes & occaisional hospital admits, but I did not comply with home care.

I have seen my health decline much more since age 30. It might have been in part from being a mom, not taking care of myself over the years or its just the natural progression. When I have exacerbations I am usually in need of O2 & my sugars go haywire. When things are stable I dont have issues with either, but I do have everything for both at home should something arise.
 
J

JazzysMom

New member
I have DDF508 and I am 39 years old. In April of this year my FEV1 was 33%. My health for the most part held its on. I didnt do treatments at home until after my daughter was born when I was 30 years old. My life consisted of enzymes & occaisional hospital admits, but I did not comply with home care.

I have seen my health decline much more since age 30. It might have been in part from being a mom, not taking care of myself over the years or its just the natural progression. When I have exacerbations I am usually in need of O2 & my sugars go haywire. When things are stable I dont have issues with either, but I do have everything for both at home should something arise.
 
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