I'm fortunate to be living near a few good Adult CF Centers. If I didn't, I'd travel to an Accredited CF center several times a year but primarily see a local pulmonologist. The two can work together. I did this for a while.
It's very important to keep attending an Accredited CF Center.
When I first started using Hypertonic Saline in 2005, I use to “mix” it. (I’m not sure if they had 7% at the time.)
My doctor prescribed 10 ml vials of both 3% and 10% saline. I would mix 2 ml of the 3% with 3 ml of the 10% to get 5 ml of approximately 7%.
The 3% vials provided 3 doses and...
There is an income limit! Also some co-pay assistance programs are not applicable if you have Medicare. I don’t qualify and my monthly co-pay is $1100. That’s 5% of the drug’s cost. (I’m not complaining.)
Pari makes a simple device to clean and unclog the microscopic holes in the eRapid Aerosol Heads. It costs less than $20 and is simple to use. I've found it very effective.
It's called the Pari EasyCare. Just google it.
In the past when traveling I've used a Pari Trek S for both Hypersal and Pulmozyme. The battery was good for up to five treatments, depending on the treatment time.
I've also used a Pari eFlow for Hypersal, keeping separate Altrea handsets just for that purpose. My understanding is the eFlow...
I was very saddened and surprised to hear about the passing of Jeannie Ricci. She will be missed on this forum, and at CF Roundtable.
Like her, I was also on Kalydeco off-label for quite a while. I had been in contact with her several times about our experiences.
Please extend my...
Last year I too was put on Home IV Colistimethate, together with Meropenem.
The Colistimethate had to be reconstituted and infused every six hours using an IV bag. This was very incontinent. I spoke to my doctor and she switched the Colistimethate to Piperacil-Tazobact. (I too can’t use...
I’m not using TOBI anymore, but during the many years I did, the treatments took less than 15 minutes. When they started taking longer, something was wrong. Usually it was a leak in the tubing between the compressor and nebulizer.
I can only speak about Adult CF Centers.
I would highly recommend the Adult Center at Columbia University, and Dr Emily DiMango! Although it’s not my primary center now, it was in the past and now is my backup. It’s located in Manhattan.
For convenience reasons, I currently use the LIJ...
I have some thoughts:
Are you sure Kalydeco will not be covered next year even after you meet the deductible? From what you indicated, they are covering it this year.
I wea on Kalydeko off-label for a number of years. My drug plan also initially approved it for only a limited...
When Symdeko was approved, my CF center gave their patients who were on Kalydeco the choice of switching to Symdeko. Among the reasons was that it would cost less. This was due to the larger market for the new drug.
I would expect the same may be true for the "triple combination"as long as...
Referring to what "preet" wrote above:
This may have been mentioned before, but I believe Pulmozyme should definitely NOT be administered with an ultrasonic nebulizer.
Pulmozyme molecules are easily damaged. I remember reading that the ampules should not be dropped because the shock can...