Recent content by bharison

I used to get 3% solution from Foundation Care Pharmacy but they no longer provide it. I now get it from CVS Pharmacy but they send 50 vials each 15 ml. which is more than needed for one doze. I have to pay out of pocket as not covered by insurance.

My co-pay for Trikafta is $10. per order. tafcares.org is the web site for The Assistance Fund I get support from. There are other support funds but this was the only one I qualified for. the CF Foundation Compass program was helpful is providing information on Medicare insurance plans and...

I am on Medicare A&B with Anthem Medicare Supplement and Part D Pharmacy plan with CVS Caremark. I get Trikafta though Accredo. I also have Co Pay Assistance through The Assistance Fund. Diagnosed at Age 64. Born May 1946. df508/r117h

Thanks> I will check that out.

Does anyone have trouble with aerosol heads used with Trio or eRapid Handset Nebulizers? I have used these for years but the aerosol heads seem to get clogged and it takes longer to do the treatment and eventually the heads don't work at all. You can't just get a new head from pharmacies or...

I am pancreatic sufficient. Trikafta has definitely help improve my FEV1 and I have more energy. Just recently stopped doing nebulized antibiotics. Just have to do Pulmozyme and Sodium Chloride.

The only nebulizer I have used is the Pari eFlow with Trio, eRapid or Altera handsets I use it for pulmozyme, sodium chloride, tobramycin, and the Altera for Cayston. I usually just have it plugged in to power but have used it with batteries also.

Age 73. Not diagnosed until 2010. Have been on Trikafta for 3 months. I have experience some burning in the eyes and eyes watering, particulary when I go outdoors even though I wear sun glasses. I had cataract surgery in 2017. I was on Kalydeco for 5 years before Trikafta.

I am approaching one month on Trikafta. I already feel I have more energy and don't get SOB climbing up hills or swimming my laps. I am 73 years old and this maybe too good to be true! :)

Yes I have had oily hair since on Trikafta just three weeks. I was on Ivacaftor for 5 years and noticed oily hair then but now it is worse. I have tried several shampoos but nothing seems to work. My hair stylist says to use lemon juice. I tried that but it is too much trouble. It is like I need...

I am pancreatic sufficient, I am 72 years old not diagnosed until I was 64. DF508 and R117H

Yes bookworm I am that woman golfing in Living Xtreme, but swimming is what really keeps the lungs working and keeps me going. I wrote a blog in 2014 for www.CFLF.org on swimming with CF.It is posted there along with many others.

I have been swimming laps for over 30 years and prefer outdoor pools. I have swum in indoor and outdoor over the years. I was not diagnosed with CF until 4.5 years ago. I am now 68 years old. I think if I had not been swimming all these years I wouldn't be writing this. I have not cultured MAC...

I got ringing in the ears from IV Tobramycin, so if you have had any of that, it could be the culprit. The only thing that bothers me with Cayston is my teeth become sensitive and doing it 3X a day is a challenge for scheduling. I alternate Cayston with Tobi every other month.