Double Delta F508

N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote></div>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote></div>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote></div>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote></div>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

Just to clarify (not trying to hijack the thread)... Double DF508 is by no means the "worst combination". DF508 is Class II mutation. In theory a Class I/Class II combo is worse and so is a Class I/Class I combo.</end quote>


And to clarify further.... this hardly ever holds up when it comes to real life, clinical outcomes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Which is what makes this thread so great.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
M

Marjolein

New member
Count me in <img src="i/expressions/face-icon-small-smile.gif" border="0"> I started nebs when i was 4 (had physio from birth). Had first IV's around that time too. After that countless others.

In october i told my whole life story to second year medical students of the univerisity where i went to the hospital as a kid. The doctor had asked me to do it. He had taken my charts with him and when i looked through my pft results i saw that by the time i was 8 my pft's were 38% highest and sometimes even high 20s. Slowly it got down to 30% and i was first screened for lungtx when i was 12 or 13. Was on the list for 3 years but was very stable again so went inactive untill end 2005. During the 6 months prior to that i went downhill fast and after that even faster.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
2

2sickkids

Guest
My soms both have the combo. Oldest 4 yrs 79% yongest unknow he is autistic and can't get him to test. My youngest has chirrosis can't gain or maintain weight w/out reglen. Both asthmatic allergy problems refux ..... . Oldest gets blockages all the time just thankful none have led to sur yet and his liver # are always ^ but not considerd a prob yet by the dr. Right now they are doing great my youngest is huge and it seem like for ever ago that they kept telling me he was dying. We refused surg that they had 6 dr's refuse to do the 7th said if we'd sign he'd do it but he thought it was wrong.
 
G

gsplover

New member
I am! I was DX at 12 because I weighed 48 pounds. They had tested for everything else so they thought the would give CF a try. I have no family history of it so we were very surprised with the results. I was very healthy until my mid 20's. FEV1 were over 90%. I didn't start any preventative stuff until I was 19. I didn't know there was stuff to do. I was extremely healthy. Of course, things change. I am now 31 and My FEV1 are around 55%. I do tons of preventative stuff now. My FEV1 was around 35% 2 years ago. I got them up and have been staying pretty steady in the 50s. I strive to get them higher but nothing seems to be working. All I can do is try!
 
G

gsplover

New member
I am! I was DX at 12 because I weighed 48 pounds. They had tested for everything else so they thought the would give CF a try. I have no family history of it so we were very surprised with the results. I was very healthy until my mid 20's. FEV1 were over 90%. I didn't start any preventative stuff until I was 19. I didn't know there was stuff to do. I was extremely healthy. Of course, things change. I am now 31 and My FEV1 are around 55%. I do tons of preventative stuff now. My FEV1 was around 35% 2 years ago. I got them up and have been staying pretty steady in the 50s. I strive to get them higher but nothing seems to be working. All I can do is try!
 
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