musclemania70
New member
what is yourbeginning fev1 (before starting Kalydeco) and current fev1?
thanks for sharing!
thanks for sharing!
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g551d mutations on Kalydeco
- Thread starter musclemania70
- Start date
musclemania70
New member
what is yourbeginning fev1 (before starting Kalydeco) and current fev1?
thanks for sharing!
thanks for sharing!
S
semperfiohana
Guest
mine was 51 in jan. i think i started kalydeco in feb and this past monday it was 56
S
semperfiohana
Guest
mine was 51 in jan. i think i started kalydeco in feb and this past monday it was 56
D
DrRoe
Guest
January 65%
April 83%
April 83%
D
DrRoe
Guest
January 65%
April 83%
April 83%
musclemania70
New member
CONGRATS
musclemania70
New member
CONGRATS
J
jessykt
Guest
Holy cow Dr Roe!! Um, mine was 60% before and at my one month appointment it was 69%!!! I'll go back beginning of June to check in...really excited for that one!
J
jessykt
Guest
Holy cow Dr Roe!! Um, mine was 60% before and at my one month appointment it was 69%!!! I'll go back beginning of June to check in...really excited for that one!
D
DrRoe
Guest
jessykt best wishes...
Just an aside - Shorty is on IVs, oral and inhaled antibiotics for his m. abscessus but has been on them since last June they haven't seem to impact on his lung functions.. but who knows maybe the combo (kalydeco+antibiotics) worked. He's been waiting a couple of weeks for the local pulmonologists to call us to set up a bronch to see what's what and get a good sample.
Just an aside - Shorty is on IVs, oral and inhaled antibiotics for his m. abscessus but has been on them since last June they haven't seem to impact on his lung functions.. but who knows maybe the combo (kalydeco+antibiotics) worked. He's been waiting a couple of weeks for the local pulmonologists to call us to set up a bronch to see what's what and get a good sample.
D
DrRoe
Guest
jessykt best wishes...
Just an aside - Shorty is on IVs, oral and inhaled antibiotics for his m. abscessus but has been on them since last June they haven't seem to impact on his lung functions.. but who knows maybe the combo (kalydeco+antibiotics) worked. He's been waiting a couple of weeks for the local pulmonologists to call us to set up a bronch to see what's what and get a good sample.
Just an aside - Shorty is on IVs, oral and inhaled antibiotics for his m. abscessus but has been on them since last June they haven't seem to impact on his lung functions.. but who knows maybe the combo (kalydeco+antibiotics) worked. He's been waiting a couple of weeks for the local pulmonologists to call us to set up a bronch to see what's what and get a good sample.
J
jessykt
Guest
I think it's got to have something to do with Kalydeco because that is such a significant improvement! Good luck!
J
jessykt
Guest
I think it's got to have something to do with Kalydeco because that is such a significant improvement! Good luck!
My son (7yrs old) had his first appt since starting Kalydeco (he has been on it for 10 weeks). He gained 3 pounds, FEV1 went from 92 to 106, lungs sound clear (first time in over 2 years), xrays show dramatic improvement (no signs of inflammation, plugging in his left lower lobe is completely gone, air trapping has reduced). The doctor has taken him off of pulmozyme and HS because they have become VERY irritating.
Just waiting on blood work to check on liver enzymes and culture results.
Just waiting on blood work to check on liver enzymes and culture results.
My son (7yrs old) had his first appt since starting Kalydeco (he has been on it for 10 weeks). He gained 3 pounds, FEV1 went from 92 to 106, lungs sound clear (first time in over 2 years), xrays show dramatic improvement (no signs of inflammation, plugging in his left lower lobe is completely gone, air trapping has reduced). The doctor has taken him off of pulmozyme and HS because they have become VERY irritating.
Just waiting on blood work to check on liver enzymes and culture results.
Just waiting on blood work to check on liver enzymes and culture results.