Recent content by bharison

  1. B

    Aerosol Heads for Nebulizers

    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...
  2. B

    Eyes Burning on Trikafta

    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.
  3. B

    Portable Nebulizers

    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.
  4. B

    Eyes Burning on Trikafta

    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.
  5. B

    Exercise and 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! :)
  6. B

    Trikafta Q&A, Experiences, etc.

    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...
  7. B

    Trikafta Q&A, Experiences, etc.

  8. B

    Want to hear from pancreatic sufficient cfers.

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

    Do you culture MAC and swim?

    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.
  10. B

    Do you culture MAC and swim?

    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...
  11. B

    Cayston dosages and ringing in ears

    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.
  12. B

    The 2013 CFF Patient Registry Reports Just Published

    I am another one of seniors with CF. I am now 68 years old. Was not diagnosed until age 64 after years of lung problems and losing a sister 43 years ago to CF. I just started Kalydeco for R117H about 10 days ago. Can't tell yet if any change in overall health status, but none of the negative...
  13. B

    anybody taken Levofloxacin 500 mg tablets for bacterial lung infections?

    I had a bad experience with levaquin just last weekend. I was given 750 mg once a day and I got a rash all over my chest in large blotches of red on arms and legs - just awful. Doc took me off after 3 days when he saw my skin. I had the same thing happen in Feb. when I took the same dose for...
  14. B

    F508 Delta and R117H .... CFRMS or Cystic Fibrosis Related Metabolic Syndrome

    I am 68 years old living with CF (DF508 and R117H). I was not diagnosed until I was 64. I also have bronchiectatis. My sister died at age 21 from CF over 40 years ago. Way back then there was no genetic testing just sweat test. She and I were both always sick and passing germs back and forth...
  15. B

    Inspiring Cystic Fibrosis Documentary!!!

    Have you seen www. LivingXtreme.org. Documentary on CF Active Lifestyles?
Top