To those on kalydeco---Lauren (your thoughts, please)

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jessykt

Guest
I've been on the drug for about 10 days. After my second dose, I had a short time of extreme chest pain, followed by half a day of coughing a bunch of crap out, and now NOTHING. My cough did change from a series of short junky coughs to one big cough like sounds like a sneeze. I don't really feel any different, other than a spontaneous 2 block run the other day (that hasn't happened in years). Maybe I'm better because I haven't had any xopenex nebs (insurance is denying xoepenex!). So maybe that's the big difference and I just don't know if it really is. But I'm not feeling like most people on here.

I'm doing two CORE studies, one at National Jewish and one at Children's Hospital. I'll do pfts at Jewish, so we'll see what they are at the next appt on April 3rd. My last fev1 was 2.03 L. I think that was 61%.

I have CFRD, but so mild that after a couple years of one unit insulin with meals they switched me to metformin. My dr told me they want to keep an eye on the diabetes because there is a chance that this could affect it. That is super exciting!
 
J

jessykt

Guest
I've been on the drug for about 10 days. After my second dose, I had a short time of extreme chest pain, followed by half a day of coughing a bunch of crap out, and now NOTHING. My cough did change from a series of short junky coughs to one big cough like sounds like a sneeze. I don't really feel any different, other than a spontaneous 2 block run the other day (that hasn't happened in years). Maybe I'm better because I haven't had any xopenex nebs (insurance is denying xoepenex!). So maybe that's the big difference and I just don't know if it really is. But I'm not feeling like most people on here.

I'm doing two CORE studies, one at National Jewish and one at Children's Hospital. I'll do pfts at Jewish, so we'll see what they are at the next appt on April 3rd. My last fev1 was 2.03 L. I think that was 61%.

I have CFRD, but so mild that after a couple years of one unit insulin with meals they switched me to metformin. My dr told me they want to keep an eye on the diabetes because there is a chance that this could affect it. That is super exciting!
 
J

JENNYC

New member
We just got the bill for my daughters last hospital stay, it was 4 nights, 5 days(not sure how they calculate the room and board). The only med she received from them was IV Vancomycin. Our bill was 17,340, however we take all of her meds with us when we go and we also refuse respitory treatment. I refuse to pay inflated prices on her meds that she already has and we actually get help with, and I refuse the respitory because her vest has always done 10 times better then there lame attempts at CPT ( they barely tap her and don't flip her properly). I am not going to pay someone to come hit start on her vest and nebulizer. Plus my insurance has a lifetime maximum. I got smart last year and signed up with Combined Insurance for their Accident and sickness policy. We have a 1 year waiting period before we can get benefits for her but it would have paid her copay 100%. Excited for October to get her so we will get benefits!!

Also Abby was diagnosed 4 years ago and the hospital just did the small genetics test so we don't know her second mutation. I asked at her last appointment if we should get the big test done so we know her second mutation and I was told no. I usually don't argue with my doc but I think I should right?
 
J

JENNYC

New member
We just got the bill for my daughters last hospital stay, it was 4 nights, 5 days(not sure how they calculate the room and board). The only med she received from them was IV Vancomycin. Our bill was 17,340, however we take all of her meds with us when we go and we also refuse respitory treatment. I refuse to pay inflated prices on her meds that she already has and we actually get help with, and I refuse the respitory because her vest has always done 10 times better then there lame attempts at CPT ( they barely tap her and don't flip her properly). I am not going to pay someone to come hit start on her vest and nebulizer. Plus my insurance has a lifetime maximum. I got smart last year and signed up with Combined Insurance for their Accident and sickness policy. We have a 1 year waiting period before we can get benefits for her but it would have paid her copay 100%. Excited for October to get her so we will get benefits!!

Also Abby was diagnosed 4 years ago and the hospital just did the small genetics test so we don't know her second mutation. I asked at her last appointment if we should get the big test done so we know her second mutation and I was told no. I usually don't argue with my doc but I think I should right?
 
S

semperfiohana

Guest
yes find out her other mutation! i didn't find mine out until i was a teenager, but i'm glad we did. i was able to jump on kalydeco when it came out because i knew both of my mutations.
 
S

semperfiohana

Guest
yes find out her other mutation! i didn't find mine out until i was a teenager, but i'm glad we did. i was able to jump on kalydeco when it came out because i knew both of my mutations.
 
J

JENNYC

New member
I just called her nurse to get it set up, I checked and she was only tested for 51 mutations. Thank you, all this is just too exciting to be real!!! God bless all of you for posting and giving us strength and hope. I am ofter so meek and don't push the docs when I should. Yall are giving me the backbone I need. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JENNYC

New member
I just called her nurse to get it set up, I checked and she was only tested for 51 mutations. Thank you, all this is just too exciting to be real!!! God bless all of you for posting and giving us strength and hope. I am ofter so meek and don't push the docs when I should. Yall are giving me the backbone I need. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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