Recent content by CF in TX

Saintoffeon, not to belabor the point people above have made... a little hemoptysis can be ok but the amount you seem to acknowledge coughing up regularly is concerning to hear. If you have a ruptured vessel in your lung that isn't healing, that blood will continue to cause problems. I really...

I also use flonase (fluticasone) which has worked great.. I used nasonex in the past and barely noticed a difference. I also use the OTC sinus flush packets on a daily basis which help particularly during bad allergy season. If I'm missing my flonase, I might do the sinus flush an extra 1-2...

I have colonized MRSA twice... was treated with Vancomycin and I believe Bactrim? through IVs. These seemed to knock it down for me but they did a number on my receiving veins. I don't know of any holistic approaches to MRSA though. Staph is a tough battle because you never really lose it...

Thanks for the response, Jeanne. I am newly registered to this community and while I have only gotten a brief glimpse into all that is offered, I have to say that I am thoroughly appreciative and impressed by the effort put into maintaining this site. I hope my comment yesterday didn't come...

Thanks for sharing. I haven't heard of Zenpep. I assumed there wasn't much difference but always looking for new/better drugs

I got an email today from CysticFibrosis.com promoting this drug but I have never heard anything about it. Anybody on it or heard of it that can share more? Looks to be maybe an alternative for enzymes. I'm currently on Creon's but don't know if this would be considered an equivalent or an...

This is great! And along the same lines I'm trying to use as my ramp up plan as well. Given everything I've read on here, what are some of the things people are considering "positive effects?" There seems like so much negativity with the drug and it's after effect that it's hard to tell...

Personally, I have a very good rapport with my CF team and typically I can call in, speak with a nurse, and get a response within 24-48 hours depending on the Drs schedule, especially if I express urgency. In this particular case, I expressed a great amount of urgency because I was worried I...

First time posting here.. Actually found this site by researching how other people were reacting to Orkambi. As a preface, my FEV1 has plateaued around 43-46 for about 6-7 years now (I'm 27) and I VERY rarely dip below the 40 mark. I was trying to get into the trial a few years ago when I was...