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Thanks for all the responses. I am happy to report that this time I am having more success. I am applying for the VX809/Kalydeco phase III trial at Stanford. I have received a response back from them and they told me exactly what to do. I need to submit my medical records to them and then wait...
Everybody's lungs respond differently to being invaded. I have had 3 bronchsin my life. 2 went off without a problem. The last one was a nightmare. In the recovery room when I woke up my lungs basically closed. I could not breathe. I had bronchospasm so bad,I was in the hospital for a week. I...
to date she has not been helpful at all but I have not persued this avenue agressively. Is that the way to do it. She is part of Kaiser in So Cal and the nearest clinical trial is in Northern Cal. But I am willing to travel. Not sure if Kaiser keeps her from doing anything.
All I have tried so...
How does one submit their name to be included in the VX809 phase III trial. I emailed repeatedlyall the appropiate names that were given as contacts for the phase II study. I never heard anything until I was told the study was closed and that they had enough participants.
so my question really...
Please keep the updates coming. it is so important to hear how you are doing. I think the daily updates are extremely beneficial. It's got to be therapeutic for you too. I am waiting and holding my breath for the 809/770 combo. I am 51 and have been waiting for this my whole life, so please keep...
I have seen an ENT and he said that is not the problem. I do sinus rinses 3 X a day to make sure my sinuses are clear.
I also at one time or anothe and in different combinations used Flonase and astelin. currently I am using Flonase 2 X daily.
I also was seen by an allergist and fully tested. I...
Does anybody have this problem and hopefully a remedy. I have a very productive cough. I bring up stuff very easily. I exercise daily (swim, bike, resistant training) plus I do nebulized treatments 3 times a day (albuterol, Dnase,atrovent,Cayston). My breathing is ok. 40-50% FEV1. My problem...
I have been using hydrocodone nightly for the past 5 months. I started using it to avoid the constant tickle I get in my throat when I go to bed.The tickle makes me cough like crazy which makes it impossible to sleep. The hydrocodone works great! It calms my cough, makes me drowsy, and allows me...
I have been using hydrocodone nightly for the past 5 months. I started using it to avoid the constant tickle I get in my throat when I go to bed.The tickle makes me cough like crazy which makes it impossible to sleep. The hydrocodone works great! It calms my cough, makes me drowsy, and allows me...
Has anybody ever used a steam mask. For years I have used steam rooms in the local gym after my work out, and they have been beneficial. Lately though, I have become worried about infection in public steam rooms. My cousin recommended a steam mask to help when it is hard to breathe. She has...
Has anybody ever used a steam mask. For years I have used steam rooms in the local gym after my work out, and they have been beneficial. Lately though, I have become worried about infection in public steam rooms. My cousin recommended a steam mask to help when it is hard to breathe. She has...
This is very interesting. I go on IV antibiotics about every 6 months. Every time I go on them I feel MISERABLE during the 2-3 week treatment and I don't see much improvement. When I come off, I actually start feeling better. Doctors tell me I am resistant to all oral antibiotics and most IV...
This is very interesting. I go on IV antibiotics about every 6 months. Every time I go on them I feel MISERABLE during the 2-3 week treatment and I don't see much improvement. When I come off, I actually start feeling better. Doctors tell me I am resistant to all oral antibiotics and most IV...
I have read a lot about the new drug and I am extremely excited. My question is will VX809/770 be effective in reducing mucous production? I think it will based on the fact that it fixes the sodium problem. There is a lot of talk about FEV improvement, but I haven't seen anything on whether it...
I have read a lot about the new drug and I am extremely excited. My question is will VX809/770 be effective in reducing mucous production? I think it will based on the fact that it fixes the sodium problem. There is a lot of talk about FEV improvement, but I haven't seen anything on whether it...
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