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I rinse the "connector" on the Nebulizer Connection Cord with hot water when it becomes sticky.

Meggy, Is it at an accredited CF Center? That should be easy enough to check by going to the Cycsic Fibrosis Foundation website or to the link provided above. If it's not, you're doing your self a big disservice. Just about everyone in this forum is being seen at an accredited center.

I'll beat Printer and tell you to find a Cystic Fibrosis Foundation accredited CF Care Center! Follow the link below and enter your location. There are a number of accredited centers in northern California. https://www.cff.org/ccd/ Regardless of your symptoms, an accredited CF Care Center is...

Interesting you mentioned this. While it's been a long time since I've used TOBI, I distinctly remember this occasionally happening. When it did happen, I would turn the pump off for a few minutes and let the TOBI settle. As I remember, it happened with more than one nebulizer pump, neither...

Asmith62, It would be surprising to me if many/any people with one Class 1 and one Class 2 mutations are pancreatic sufficient. To simplify: Class 1 mutations do not produce any CFTR protein. Class 2 mutations, create faulty CFTR protein that can't reach the cell wall. Mutations of other...

mstein, I switched to Symdeko this past March, after taking Kalydeco for four years. When I started the Kalydeco, I too brought up loads of "crap". The volume of phlegm was MUCH more than usual, and it was mush thinner. For me, this lasted less than a week. That was more than four years...

While advances like this are only dreams right now, hopefully they are not as far off as we may think. Let's Dream! "3D bioprinted lungs to be available for global transplants" "Israel’s Collplant inks licensing and commercialization deal with major American biotech firm to make human...

Rebjane, If you haven't already, check the tubing. This is often the cause of the problem, not the compressor. The pulsing pressure can cause small cracks to develop over time. These cracks can be quite small and hardly noticeable but they will cause the treatment times to increase. I've...

Yes - I have significantly reduced treatments. When I started Kalydeco over four years ago, I was doing so well that I decided to try stopping everything else. My doctor said he had another patient that did the same thing but ended up returning to some of the treatments he had discontinued...

Since using Kalydeco/Symdeko, I usually don't use Hypertonic Saline when traveling. I do however take an eFlow and a few heads that I keep for Saline only, if the need arises. Before Kalydeco/Symdeko I traveled with a PARI TREK S (and battery pack), using it for Saline and Pulmozyme on trips...

For me, nothing. I've intentionally tried skipping doses a number of times. It takes missing three doses before I begin to notice changes. Then, a productive cough starts to reappear, producing thick sticky mucus. Once the drug is resumed, it's only hours before the mucus thins and the cough...

If anyone has used the PARI EasyCare Cleaning Aide for eFlow & eRapid Aerosol Heads, I would be interested to hear your experiences with it. http://nebology.com/cleaning-aid-for-eflow-rapid-aerosol-head-88.html For Cayston, I use at least five eFlow heads at a time to avoid having to clean...

I've been using it for five months now, and haven't detected any adverse side effects.

amlorr94, While there are a number of good accredited Adult CF Centers in the New York area, I would highly recommend the one at Columbia University, if it’s convenient for you to get to. I had attended the Adult CF Center at Mt Sinai, but I think they presently only have a Pediatric Center...

ethhan508, I agree that not all drugs react with each other in a neutralizing way. However the reason to wait before nebulizing antibiotics after using Pulmozyme is to allow it to break down and clear out the thick mucus so that the antibiotics can reach the lung tissue where they can be...

A number of years ago I read that it took Pulmozyme about 30 minutes to break down the mucus. Therefore, nothing should be nebulized for 30 minutes following Pulmozyme to realize its full benefit.

I’ve been on Symdeko for about 6 weeks now. The marked improvement in my breathing, which I experienced during the first few days, has reminded constant. I seem to be experiencing some mild dizziness at times , which is listed as a possible side affect. Since I’m taveling in Israel, it’s a bit...

I switched to Symdeko from Kalydeco about four weeks ago. No sweat test. Just culture and Full PFT. Good luck. It significantly improved my breathing.

My advice for now is to definitely go for Symdeko if you are eligible. With this weekend’s holidays for most of us fast approaching (Passover and Easter) I’m keeping this brief for now. After taking the first dose of Symdeko last Monday morning, I thought I detected a SIGNIFICANT improvement...

Has anyone switched from Kalydeco to Symdeko? I’m about to makethe change and am wondering what others have experienced. During a recent CF Centervisit my doctor mentioned there may be some benefits of switching, one of which could be an increase in FEV-1. She was recommending that all...