This is really CRAZY but...

K

karismom

New member
HI TERRI AND MELISSA AND...... ALL MY "FAMILY!"
I HAVE NOT BEEN HERE FOR AWHILE STILL WAS REELING FROM KARI'S DEATH... IT WAS ONE YEAR MAY 15th... SIGH....

As you guys know my other girl Holli Jade has CF too... and has had some "bumps in the road" with substance abuse... smoking pot... which she was doing after Kari died... (NOT NOW THANK GOD) but she was there for a minute much to our DISTRESS... anyway she went to her clinic appt supposed to go twice a year but it has been a year... she went on Friday May 15th!!! and long story short she blew the BEST PFT's she pretty much ever has!!! And her 02 is 100%!!! I nearly passed out from SHOCK!!! I was sure that they were gonna tell her that.... oh I don't know that she was really sick I guess.... It was so WEIRD..... My point here I guess is this... my girls have DeltaF508 times 2 which is supposed to be the most deadly combo and indeed it was for Kari she passed at 27 yrs old after 2 transplants... if they are right... HOW has my daughter stayed SO HEALTHY all her life??? She has to have sinus surgery but other than that and tummy troubles she is GOOD!!! Sometimes I FORGET that she has CF!!! I THANK GOD EVERY DAY but we are baffled as well!!! ANYONE else have a similar story??? I hope that you all have been doin OK I think of ya all alot.... Peace.

Lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
HI TERRI AND MELISSA AND...... ALL MY "FAMILY!"
I HAVE NOT BEEN HERE FOR AWHILE STILL WAS REELING FROM KARI'S DEATH... IT WAS ONE YEAR MAY 15th... SIGH....

As you guys know my other girl Holli Jade has CF too... and has had some "bumps in the road" with substance abuse... smoking pot... which she was doing after Kari died... (NOT NOW THANK GOD) but she was there for a minute much to our DISTRESS... anyway she went to her clinic appt supposed to go twice a year but it has been a year... she went on Friday May 15th!!! and long story short she blew the BEST PFT's she pretty much ever has!!! And her 02 is 100%!!! I nearly passed out from SHOCK!!! I was sure that they were gonna tell her that.... oh I don't know that she was really sick I guess.... It was so WEIRD..... My point here I guess is this... my girls have DeltaF508 times 2 which is supposed to be the most deadly combo and indeed it was for Kari she passed at 27 yrs old after 2 transplants... if they are right... HOW has my daughter stayed SO HEALTHY all her life??? She has to have sinus surgery but other than that and tummy troubles she is GOOD!!! Sometimes I FORGET that she has CF!!! I THANK GOD EVERY DAY but we are baffled as well!!! ANYONE else have a similar story??? I hope that you all have been doin OK I think of ya all alot.... Peace.

Lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
HI TERRI AND MELISSA AND...... ALL MY "FAMILY!"
I HAVE NOT BEEN HERE FOR AWHILE STILL WAS REELING FROM KARI'S DEATH... IT WAS ONE YEAR MAY 15th... SIGH....

As you guys know my other girl Holli Jade has CF too... and has had some "bumps in the road" with substance abuse... smoking pot... which she was doing after Kari died... (NOT NOW THANK GOD) but she was there for a minute much to our DISTRESS... anyway she went to her clinic appt supposed to go twice a year but it has been a year... she went on Friday May 15th!!! and long story short she blew the BEST PFT's she pretty much ever has!!! And her 02 is 100%!!! I nearly passed out from SHOCK!!! I was sure that they were gonna tell her that.... oh I don't know that she was really sick I guess.... It was so WEIRD..... My point here I guess is this... my girls have DeltaF508 times 2 which is supposed to be the most deadly combo and indeed it was for Kari she passed at 27 yrs old after 2 transplants... if they are right... HOW has my daughter stayed SO HEALTHY all her life??? She has to have sinus surgery but other than that and tummy troubles she is GOOD!!! Sometimes I FORGET that she has CF!!! I THANK GOD EVERY DAY but we are baffled as well!!! ANYONE else have a similar story??? I hope that you all have been doin OK I think of ya all alot.... Peace.

Lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
HI TERRI AND MELISSA AND...... ALL MY "FAMILY!"
I HAVE NOT BEEN HERE FOR AWHILE STILL WAS REELING FROM KARI'S DEATH... IT WAS ONE YEAR MAY 15th... SIGH....

As you guys know my other girl Holli Jade has CF too... and has had some "bumps in the road" with substance abuse... smoking pot... which she was doing after Kari died... (NOT NOW THANK GOD) but she was there for a minute much to our DISTRESS... anyway she went to her clinic appt supposed to go twice a year but it has been a year... she went on Friday May 15th!!! and long story short she blew the BEST PFT's she pretty much ever has!!! And her 02 is 100%!!! I nearly passed out from SHOCK!!! I was sure that they were gonna tell her that.... oh I don't know that she was really sick I guess.... It was so WEIRD..... My point here I guess is this... my girls have DeltaF508 times 2 which is supposed to be the most deadly combo and indeed it was for Kari she passed at 27 yrs old after 2 transplants... if they are right... HOW has my daughter stayed SO HEALTHY all her life??? She has to have sinus surgery but other than that and tummy troubles she is GOOD!!! Sometimes I FORGET that she has CF!!! I THANK GOD EVERY DAY but we are baffled as well!!! ANYONE else have a similar story??? I hope that you all have been doin OK I think of ya all alot.... Peace.

Lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
HI TERRI AND MELISSA AND...... ALL MY "FAMILY!"
<br />I HAVE NOT BEEN HERE FOR AWHILE STILL WAS REELING FROM KARI'S DEATH... IT WAS ONE YEAR MAY 15th... SIGH....
<br />
<br />As you guys know my other girl Holli Jade has CF too... and has had some "bumps in the road" with substance abuse... smoking pot... which she was doing after Kari died... (NOT NOW THANK GOD) but she was there for a minute much to our DISTRESS... anyway she went to her clinic appt supposed to go twice a year but it has been a year... she went on Friday May 15th!!! and long story short she blew the BEST PFT's she pretty much ever has!!! And her 02 is 100%!!! I nearly passed out from SHOCK!!! I was sure that they were gonna tell her that.... oh I don't know that she was really sick I guess.... It was so WEIRD..... My point here I guess is this... my girls have DeltaF508 times 2 which is supposed to be the most deadly combo and indeed it was for Kari she passed at 27 yrs old after 2 transplants... if they are right... HOW has my daughter stayed SO HEALTHY all her life??? She has to have sinus surgery but other than that and tummy troubles she is GOOD!!! Sometimes I FORGET that she has CF!!! I THANK GOD EVERY DAY but we are baffled as well!!! ANYONE else have a similar story??? I hope that you all have been doin OK I think of ya all alot.... Peace.
<br />
<br />Lisa <img src="i/expressions/rose.gif" border="0">
 
S

saveferris2009

New member
ya there are many stories of siblings or even people who aren't related who have the same mutations but different outcomes.

so much determines CF outcomes, not just genes. modifier genes, lifestyle, med compliance, type of bacteria (MRSA, PA, Cepacia, etc), age of diagnosis, and a ton of other factors play into CF phenotype.

take care
 
S

saveferris2009

New member
ya there are many stories of siblings or even people who aren't related who have the same mutations but different outcomes.

so much determines CF outcomes, not just genes. modifier genes, lifestyle, med compliance, type of bacteria (MRSA, PA, Cepacia, etc), age of diagnosis, and a ton of other factors play into CF phenotype.

take care
 
S

saveferris2009

New member
ya there are many stories of siblings or even people who aren't related who have the same mutations but different outcomes.

so much determines CF outcomes, not just genes. modifier genes, lifestyle, med compliance, type of bacteria (MRSA, PA, Cepacia, etc), age of diagnosis, and a ton of other factors play into CF phenotype.

take care
 
S

saveferris2009

New member
ya there are many stories of siblings or even people who aren't related who have the same mutations but different outcomes.

so much determines CF outcomes, not just genes. modifier genes, lifestyle, med compliance, type of bacteria (MRSA, PA, Cepacia, etc), age of diagnosis, and a ton of other factors play into CF phenotype.

take care
 
S

saveferris2009

New member
ya there are many stories of siblings or even people who aren't related who have the same mutations but different outcomes.
<br />
<br />so much determines CF outcomes, not just genes. modifier genes, lifestyle, med compliance, type of bacteria (MRSA, PA, Cepacia, etc), age of diagnosis, and a ton of other factors play into CF phenotype.
<br />
<br />take care
 
J

JazzysMom

New member
Hello My Friend!

This is one of the mysteries of CF that might never be unraveled.

Glad to hear that she is doing well especially after sliipping into that defiance mode/slump after Kari's death!

HUGS
 
J

JazzysMom

New member
Hello My Friend!

This is one of the mysteries of CF that might never be unraveled.

Glad to hear that she is doing well especially after sliipping into that defiance mode/slump after Kari's death!

HUGS
 
J

JazzysMom

New member
Hello My Friend!

This is one of the mysteries of CF that might never be unraveled.

Glad to hear that she is doing well especially after sliipping into that defiance mode/slump after Kari's death!

HUGS
 
J

JazzysMom

New member
Hello My Friend!

This is one of the mysteries of CF that might never be unraveled.

Glad to hear that she is doing well especially after sliipping into that defiance mode/slump after Kari's death!

HUGS
 
J

JazzysMom

New member
Hello My Friend!
<br />
<br />This is one of the mysteries of CF that might never be unraveled.
<br />
<br />Glad to hear that she is doing well especially after sliipping into that defiance mode/slump after Kari's death!
<br />
<br />HUGS
 
P

point

New member
I agree w/ pp, but really wanted to highlight the probability of modifier genes. There was a twin/sib study that looked at these genes. There are actually some modifier genes ID'ed. My sib's and I participated, along w/ my parents. We didn't receive our specific data on it since it was a blind study, but I feel over the next few years a lot more will be understood and communicated relative to modifier genes.

There are three of us w/ CF in my family, and we are all different relative to our CF health.
 
P

point

New member
I agree w/ pp, but really wanted to highlight the probability of modifier genes. There was a twin/sib study that looked at these genes. There are actually some modifier genes ID'ed. My sib's and I participated, along w/ my parents. We didn't receive our specific data on it since it was a blind study, but I feel over the next few years a lot more will be understood and communicated relative to modifier genes.

There are three of us w/ CF in my family, and we are all different relative to our CF health.
 
P

point

New member
I agree w/ pp, but really wanted to highlight the probability of modifier genes. There was a twin/sib study that looked at these genes. There are actually some modifier genes ID'ed. My sib's and I participated, along w/ my parents. We didn't receive our specific data on it since it was a blind study, but I feel over the next few years a lot more will be understood and communicated relative to modifier genes.

There are three of us w/ CF in my family, and we are all different relative to our CF health.
 
P

point

New member
I agree w/ pp, but really wanted to highlight the probability of modifier genes. There was a twin/sib study that looked at these genes. There are actually some modifier genes ID'ed. My sib's and I participated, along w/ my parents. We didn't receive our specific data on it since it was a blind study, but I feel over the next few years a lot more will be understood and communicated relative to modifier genes.

There are three of us w/ CF in my family, and we are all different relative to our CF health.
 
P

point

New member
I agree w/ pp, but really wanted to highlight the probability of modifier genes. There was a twin/sib study that looked at these genes. There are actually some modifier genes ID'ed. My sib's and I participated, along w/ my parents. We didn't receive our specific data on it since it was a blind study, but I feel over the next few years a lot more will be understood and communicated relative to modifier genes.
<br />
<br />There are three of us w/ CF in my family, and we are all different relative to our CF health.
 
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