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Hi, I was wondering if any CFer's are in the following boat and can give me guidance. I am becoming eligible for Medicare soon and will have to sign up for a plan. Currently, the copay for Trikafta under part D prescriptions is just insane. I would never be able to afford it. I do not...
bharison, I am signing up for Medicare soon. May I ask you...how were you able to get assistance through the copay assistance fund? Which one did you use? Did you have to qualify by making a certain cut off per year? What is your monthly copay for Trikafta? I would greatly apprecaite you...
just wanted to drop a quick thought. I am W1282X and R117H. when I was diagnosed at 14 the CF doc said I was mild. Well, I am 42 and I have 30% lung function. I cannot even go into all the hospitalizations and surgeries I have had. Just keep that in mind. Mild does not stay mild forever...
Printer, I lived in a fantasy for many years thinking, hoping, and begging god for a cure. I fully expect that this disease will kill me. God bless you for surviving till 72.
JennyC, yes, I do know about the Kalydeco trial for my mutation and I also know Marci. I am trying to get into the...
Hi, I just want to answer your question. I am 42 years old. I will die from CF. There will never be a cure in my lifetime or for anyone reading this. There will be drugs..yes. I get frustrated when I see others write how fortunate we are in the last 20 years with the developement of drugs...
I switched from Albuterol to Xopenex because of heart rate problems. The xopenex can make your heart race but much less then albuterol....as with me it only happens sometimes. Tell your DR to write you the script.
yes, great question Anien. I have asked my Dr about sweat levels and they told me that "just because a level goes down it doesnt mean your body is working normal". what EXACTELY is the significance of the sweat test?
Hi Katie, Im in the same boat as you. I recently lost 15 lbs off a skinny body and I am trying everything to gain it back. I have gained back 10 lbs but it took me about 8 months. People were commenting daily about my weight loss--so I know how you feel. I did a few things to help gain it...
Hi Katie, Im in the same boat as you. I recently lost 15 lbs off a skinny body and I am trying everything to gain it back. I have gained back 10 lbs but it took me about 8 months. People were commenting daily about my weight loss--so I know how you feel. I did a few things to help gain it...
Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it...
Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it...
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