G
Gorf
Guest
Congrats
G
Gorf
Guest
Congrats
G
Gorf
Guest
Just curious, may be to soon, I have heard of others getting more junk up like the lungs clearing out what it coudln't before, have you? How is your excersise tolerance level compared to before, are you able to notice a difference?
G
Gorf
Guest
Just curious, may be to soon, I have heard of others getting more junk up like the lungs clearing out what it coudln't before, have you? How is your excersise tolerance level compared to before, are you able to notice a difference?
J
jessykt
Guest
I want to know what Gorf asked....my husband said he's noticed a higher tolerance in me to walking more, but I didn't bring a lot of junk up AT ALL and wonder why as I'm hearing most people are bringing stuff up.
J
jessykt
Guest
I want to know what Gorf asked....my husband said he's noticed a higher tolerance in me to walking more, but I didn't bring a lot of junk up AT ALL and wonder why as I'm hearing most people are bringing stuff up.
Im soooo very happy with your test results!!! I have a 17 year old with CF and has only been hospitalized twice for IV Antibiotic Therapy, but Im glad to hear that there is hope for the future. Best of luck to you and please keep posting your results.
P.S. Where can I find out more information on Sweat Test results, and will my Dr. give my daughter tests? Thank you.
P.S. Where can I find out more information on Sweat Test results, and will my Dr. give my daughter tests? Thank you.
Im soooo very happy with your test results!!! I have a 17 year old with CF and has only been hospitalized twice for IV Antibiotic Therapy, but Im glad to hear that there is hope for the future. Best of luck to you and please keep posting your results.
P.S. Where can I find out more information on Sweat Test results, and will my Dr. give my daughter tests? Thank you.
P.S. Where can I find out more information on Sweat Test results, and will my Dr. give my daughter tests? Thank you.
M
marcijo
Guest
Thanks everyone!
I brought up gunk the first week I was on it.....but I was also finishing up antibiotics so I don't know if the gunk I coughed up was due to the antibiotics or the Kalydeco. I didn't really have the ton of gunk that some others talk about coming up....but maybe its because my lung function was in the 80's (FEV1). I have no idea. I rarely cough up anything now....I don't think I could give a sputum sample-I just don't think there is anything in my lungs.
As far as my exercise tolerance-I think it is much better-because I don't have to cough anymore when I am exercising! My lung function was 83% when I started Kalydeco, and went up to 87% after 3+ weeks on the meds. I am hoping to see it go up even more, but we'll see.
I also think I had a cold and didn't have to go on antibiotics! My kids had a sore throat/bad cough....I came down with a sore throat and just felt crummy-a bit of coughing as well. It is on its way out (I hope!) and I didn't have to go on antibioitics-which has NEVER happened for me.
I will keep you guys posted on any updates! I don't go back to my CF clinic until mid July.....
I brought up gunk the first week I was on it.....but I was also finishing up antibiotics so I don't know if the gunk I coughed up was due to the antibiotics or the Kalydeco. I didn't really have the ton of gunk that some others talk about coming up....but maybe its because my lung function was in the 80's (FEV1). I have no idea. I rarely cough up anything now....I don't think I could give a sputum sample-I just don't think there is anything in my lungs.
As far as my exercise tolerance-I think it is much better-because I don't have to cough anymore when I am exercising! My lung function was 83% when I started Kalydeco, and went up to 87% after 3+ weeks on the meds. I am hoping to see it go up even more, but we'll see.
I also think I had a cold and didn't have to go on antibiotics! My kids had a sore throat/bad cough....I came down with a sore throat and just felt crummy-a bit of coughing as well. It is on its way out (I hope!) and I didn't have to go on antibioitics-which has NEVER happened for me.
I will keep you guys posted on any updates! I don't go back to my CF clinic until mid July.....
M
marcijo
Guest
Thanks everyone!
I brought up gunk the first week I was on it.....but I was also finishing up antibiotics so I don't know if the gunk I coughed up was due to the antibiotics or the Kalydeco. I didn't really have the ton of gunk that some others talk about coming up....but maybe its because my lung function was in the 80's (FEV1). I have no idea. I rarely cough up anything now....I don't think I could give a sputum sample-I just don't think there is anything in my lungs.
As far as my exercise tolerance-I think it is much better-because I don't have to cough anymore when I am exercising! My lung function was 83% when I started Kalydeco, and went up to 87% after 3+ weeks on the meds. I am hoping to see it go up even more, but we'll see.
I also think I had a cold and didn't have to go on antibiotics! My kids had a sore throat/bad cough....I came down with a sore throat and just felt crummy-a bit of coughing as well. It is on its way out (I hope!) and I didn't have to go on antibioitics-which has NEVER happened for me.
I will keep you guys posted on any updates! I don't go back to my CF clinic until mid July.....
I brought up gunk the first week I was on it.....but I was also finishing up antibiotics so I don't know if the gunk I coughed up was due to the antibiotics or the Kalydeco. I didn't really have the ton of gunk that some others talk about coming up....but maybe its because my lung function was in the 80's (FEV1). I have no idea. I rarely cough up anything now....I don't think I could give a sputum sample-I just don't think there is anything in my lungs.
As far as my exercise tolerance-I think it is much better-because I don't have to cough anymore when I am exercising! My lung function was 83% when I started Kalydeco, and went up to 87% after 3+ weeks on the meds. I am hoping to see it go up even more, but we'll see.
I also think I had a cold and didn't have to go on antibiotics! My kids had a sore throat/bad cough....I came down with a sore throat and just felt crummy-a bit of coughing as well. It is on its way out (I hope!) and I didn't have to go on antibioitics-which has NEVER happened for me.
I will keep you guys posted on any updates! I don't go back to my CF clinic until mid July.....
Marci,
I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us.
How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?
I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us.
How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?
Marci,
I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us.
How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?
I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us.
How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?
M
marcijo
Guest
JoyousMom - My mutations are DF508 and R117H. In-vitro studies showed hope that Kalydeco would work with the R117H. I asked my doctor if he would write a prescription for me-he said he would. Insurance covered it - and here I am! I am taking it off-label.
Is your daughter DDF508 (are both her mutations DF508)?
Is your daughter DDF508 (are both her mutations DF508)?
M
marcijo
Guest
JoyousMom - My mutations are DF508 and R117H. In-vitro studies showed hope that Kalydeco would work with the R117H. I asked my doctor if he would write a prescription for me-he said he would. Insurance covered it - and here I am! I am taking it off-label.
Is your daughter DDF508 (are both her mutations DF508)?
Is your daughter DDF508 (are both her mutations DF508)?
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JoyousMom</b></i> Marci, I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us. How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?</end quote>
I have DF508 and I have been on Kalydeco for nearly 2 months.
I've seen positive results as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have DF508 and I have been on Kalydeco for nearly 2 months.
I've seen positive results as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JoyousMom</b></i> Marci, I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more research conducted etc., and we had about two years of waiting ahead of us. How did you manage to get this pill?!!!! Is there any hope for the rest of us to get it sooner?</end quote>
I have DF508 and I have been on Kalydeco for nearly 2 months.
I've seen positive results as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have DF508 and I have been on Kalydeco for nearly 2 months.
I've seen positive results as well <img src="i/expressions/face-icon-small-smile.gif" border="0">
