Recent content by stephen

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.

I agree!

I agree!

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...

I got a third Moderna shot. It was approved, and actually recommended by several of my doctors including my immunologist and CF doctor.

I got a booster 6.5 months after the second Maderna shot. If it doesn’t hurt, why not. 79 years old, FEV1 about 42%.

No advice - but just wishing you all the best.

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.

Thanks. The survey results are very interesting.

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...

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...