Abby 1 year Kalydeco Clinic Update
I have updated everyone on facebook but I haven't been on here in quite some time because I have been on my first Vacation since Abby was diagnosed. I actually got to take my full 2 weeks and didn't have to spend my entire vacation at the hospital!!! It was fantastic!!! It would have been better had we have not been broke but still loving life with Kalydeco!!! So Abby has been taking Kalydeco since June 28, 2012. We went to clinic a couple of weeks ago and discovered that we had a completely new CF team! Dr was gone...fellow leaving...and nurse had a baby and not coming back. Wow!! So here is the comparison:
.................FVC ...FEV1.....FEV1/FVC ....FEF 25-75....FEF25....FEF50....FEF75....PEF.....MVV....FEV1% PRED...FIV1...BMI......Sweat Cl
BEFORE ,,,,,,1.53,,,1.41,,,,,,,,,92.1,,,,,,,,,,1.87,,,,,,,,,,2.89,,,,,,2.18,,,,,,,.94,,,,,3.09,,,,53.36,,,111.20,,,,,,,,,,,1.10,,,50%,,,,,,,,<100
1 YR AFTER 1.70,,,,1.56,,,,,,,,,92.8,,,,,,,,,,2.10,,,,,,,,,,3.28,,,,,,2.49,,,,,,,.97,,,,,3.81,,,,58.84,,,109.50,,,,,,,,,,,1.51,,,49.9%,,,,,,,,,88
Had to get creative to make it read easier
So also before starting Kalydeco Abby had terrible sinus' She has had 15 surgeries all of them to do with sinus' most were polyp removal. For a while she had to have polyps removed every 3 months. Not fun!! Her last sinus surgery was Sept 2011!!! She had this awful sniffle and post drainage cough pretty much constant and since day 3 of Kalydeco NO MORE only when she is sick!!! Amazing!!! She also every since diagnosis at age 2 has been admitted to the hospital twice a year.....her last hospital admission was March 1, 2012!!! She also cultured MRSA for about 2 to 3 years prior (can't remember for sure) and since being on Kalydeco it has been gone with the exception of the clinic before last when it showed back up. However she came down with RSV and Rhino virus at the same time and became very sick with her FEV1 dropping to .99!! Very scary but she fought it off on her own with no antibiotics!! And I kind of agree with my friends that maybe it was able to creep back in since she was so sick. As many of you know I have 2 home spirometer devices (Piko1 and Spirometer). We checked both with the clinic machines and they were spot on. We have seen her FEV1 go as high as 1.67!!!! Yes that's right 1.67!!! Unfortunately here in TX we had a really bad allergy season with the cold fronts and they got her about near every time one rolled in which happened to be every time she had clinic!! ugh!!! So this is the first time that her clinic is seeing the 1.56 which is still slightly low as she usually stays high 1.50's and low 1.60's....but I'll take them seeing anything!! Her BMI at one clinic was 58%!!! We are having trouble with her enzymes at the moment and she has stopped gaining weight...no lose....but no gain either. She has turned 8 and independent so I'm not sure if it is we need to go up on her enzymes since we haven't in years or if she is just not taking them properly. She doesn't like to show me her stools so that has been a huge fight trying to watch her and making her show me. And she grabs snacks off and on throughout the day and gets her own enzymes which use to not be a problem.....now not so sure. Anyhow we will get that kink worked out Her sweat choride was taken several times prior and when she was little it did register at a 109 but their new machines could only tell me greater than 100 so who knows how greater than 100 it was??? We took at at 1 month and it still read greater than 100 so I did change the way I gave it to her...I was giving it at the beginning of the meal and I started giving it to her 3/4 of the way through the meal. So at 3 months we had it tested again and it was 88. I would like to have it tested again but her dr does not seem real entertained by that idea and honestly I am scared and not pushing. What if it went back to showing greater than 100?? But yet she is sooooo much better!!! I would not have a leg to stand on...and I CANNOT bare her going back to the way things were. I just can't watch her that way now seeing her so healthy. I wish I wish I wish you all could understand the magnitude of what this HELP has done for my baby. Her blood work turned out great. They said that she could drop down on her Vitamin D because the levels are way above where they use to be (Kalydeco?????) Her chest x-ray looked great as well. Anyhow the new Dr at least let me bring up the work Kalydeco and didn't snarl or bark so I am super excited that I may finally get to share all of this great news with him and maybe just maybe he will care. He is very research oriented so I am hopeful!!! He told me that before he would refill her prescription that he would have to research her 2nd mutation. After many calls to the nurse he did give me 6 more months....just not sure if it is until he has time to research more or if he is comfortable with it??? We will have to see. We also do not know which mutation if not both that it is HELPING? I hope I am not leaving anything out. Most of all I hope this gives you all peace and hope!! CF is no longer a front runner in our lives...besides her treatments and dr appointments we rarely ever have to even think about it anymore. I have tears in my eyes as I write this because I wish that all of you could experience what a true blessing we have. I know without a doubt that we have added years to Abby's life...I also see the new quality of life she and we all have! God is so good!
I have updated everyone on facebook but I haven't been on here in quite some time because I have been on my first Vacation since Abby was diagnosed. I actually got to take my full 2 weeks and didn't have to spend my entire vacation at the hospital!!! It was fantastic!!! It would have been better had we have not been broke but still loving life with Kalydeco!!! So Abby has been taking Kalydeco since June 28, 2012. We went to clinic a couple of weeks ago and discovered that we had a completely new CF team! Dr was gone...fellow leaving...and nurse had a baby and not coming back. Wow!! So here is the comparison:
.................FVC ...FEV1.....FEV1/FVC ....FEF 25-75....FEF25....FEF50....FEF75....PEF.....MVV....FEV1% PRED...FIV1...BMI......Sweat Cl
BEFORE ,,,,,,1.53,,,1.41,,,,,,,,,92.1,,,,,,,,,,1.87,,,,,,,,,,2.89,,,,,,2.18,,,,,,,.94,,,,,3.09,,,,53.36,,,111.20,,,,,,,,,,,1.10,,,50%,,,,,,,,<100
1 YR AFTER 1.70,,,,1.56,,,,,,,,,92.8,,,,,,,,,,2.10,,,,,,,,,,3.28,,,,,,2.49,,,,,,,.97,,,,,3.81,,,,58.84,,,109.50,,,,,,,,,,,1.51,,,49.9%,,,,,,,,,88
Had to get creative to make it read easier
So also before starting Kalydeco Abby had terrible sinus' She has had 15 surgeries all of them to do with sinus' most were polyp removal. For a while she had to have polyps removed every 3 months. Not fun!! Her last sinus surgery was Sept 2011!!! She had this awful sniffle and post drainage cough pretty much constant and since day 3 of Kalydeco NO MORE only when she is sick!!! Amazing!!! She also every since diagnosis at age 2 has been admitted to the hospital twice a year.....her last hospital admission was March 1, 2012!!! She also cultured MRSA for about 2 to 3 years prior (can't remember for sure) and since being on Kalydeco it has been gone with the exception of the clinic before last when it showed back up. However she came down with RSV and Rhino virus at the same time and became very sick with her FEV1 dropping to .99!! Very scary but she fought it off on her own with no antibiotics!! And I kind of agree with my friends that maybe it was able to creep back in since she was so sick. As many of you know I have 2 home spirometer devices (Piko1 and Spirometer). We checked both with the clinic machines and they were spot on. We have seen her FEV1 go as high as 1.67!!!! Yes that's right 1.67!!! Unfortunately here in TX we had a really bad allergy season with the cold fronts and they got her about near every time one rolled in which happened to be every time she had clinic!! ugh!!! So this is the first time that her clinic is seeing the 1.56 which is still slightly low as she usually stays high 1.50's and low 1.60's....but I'll take them seeing anything!! Her BMI at one clinic was 58%!!! We are having trouble with her enzymes at the moment and she has stopped gaining weight...no lose....but no gain either. She has turned 8 and independent so I'm not sure if it is we need to go up on her enzymes since we haven't in years or if she is just not taking them properly. She doesn't like to show me her stools so that has been a huge fight trying to watch her and making her show me. And she grabs snacks off and on throughout the day and gets her own enzymes which use to not be a problem.....now not so sure. Anyhow we will get that kink worked out
Her sweat choride was taken several times prior and when she was little it did register at a 109 but their new machines could only tell me greater than 100 so who knows how greater than 100 it was??? We took at at 1 month and it still read greater than 100 so I did change the way I gave it to her...I was giving it at the beginning of the meal and I started giving it to her 3/4 of the way through the meal. So at 3 months we had it tested again and it was 88. I would like to have it tested again but her dr does not seem real entertained by that idea and honestly I am scared and not pushing. What if it went back to showing greater than 100?? But yet she is sooooo much better!!! I would not have a leg to stand on...and I CANNOT bare her going back to the way things were. I just can't watch her that way now seeing her so healthy. I wish I wish I wish you all could understand the magnitude of what this HELP has done for my baby. Her blood work turned out great. They said that she could drop down on her Vitamin D because the levels are way above where they use to be (Kalydeco?????) Her chest x-ray looked great as well. Anyhow the new Dr at least let me bring up the work Kalydeco and didn't snarl or bark so I am super excited that I may finally get to share all of this great news with him and maybe just maybe he will care. He is very research oriented so I am hopeful!!! He told me that before he would refill her prescription that he would have to research her 2nd mutation. After many calls to the nurse he did give me 6 more months....just not sure if it is until he has time to research more or if he is comfortable with it??? We will have to see. We also do not know which mutation if not both that it is HELPING? I hope I am not leaving anything out. Most of all I hope this gives you all peace and hope!! CF is no longer a front runner in our lives...besides her treatments and dr appointments we rarely ever have to even think about it anymore. I have tears in my eyes as I write this because I wish that all of you could experience what a true blessing we have. I know without a doubt that we have added years to Abby's life...I also see the new quality of life she and we all have! God is so good!