Search results

  1. 2

    spacer brand

    Can you soak the chambers in alcohol or hydrogen peroxide to sterilize?
  2. 2

    Good Probiotic?

    Hail2Pitt, the Vitacost one looks great, but for those just starting on probiotics, how many should you start with and what's the ramp up to 3x a day?
  3. 2

    tri verus quad flu shot

    Thanks for the info!
  4. 2

    Surprising Results with Essential Oils! Give it a Go!

    Great video, Salty! Thanks!!
  5. 2

    I want to make friends with people who understand me.

    Isabel, I'm so sorry that you have CF. You are dealing with a LOT with the disease and getting a late diagnosis on top of everything else a 17-yr old has on her plate. I'm a mom of two girls with CF, one being your age, and my heart goes out to you. Your depression and anger are completely...
  6. 2

    Pseudomonas- cipro + ?

    Please go see someone who specializes in CF! This sounds just awful! I'm not a doctor, but I would push for aggressive IV therapy to knock down the pseudo infection and then prophylactic antibiotics after that. You will need cultures that show what drugs will be effective on your particular...
  7. 2

    Traveling to Disney with CF, Vest, and Portable O2 concentrator?

    All great advice. You can't book Fast Passes until you are 60 days out if you are staying at a Disney Resort AND you have park tickets (30 days for those not staying on property). You can add your reservation and your ticket numbers to the My Disney Experience app. Once that's done, you can add...
  8. 2

    Surprising Results with Essential Oils! Give it a Go!

    Thanks Salty! Appreciate the info. They have a lot of oils, at least from my newbie point of view. I believe they may have expanded when they joined up with Native American Nutritionals. I am intrigued by what ToriMom wrote as well. We'll give our basic approach a try for awhile and go from...
  9. 2

    Surprising Results with Essential Oils! Give it a Go!

    Forgot to say that Rocky Mountain Essential Oils website has comparable blends to YL and DT. They have a matrix that maps their blends to YL and DT.
  10. 2

    Surprising Results with Essential Oils! Give it a Go!

    I've recently ordered from Rocky Mountain Essential Oils (they merged with Native American Naturals). I read that these are excellent oils (organic, sourced at origin, can be taken internally), but wanted to see if anyone here has used them before and has an opinion. They are much less expensive...
  11. 2

    I was treated like a freak

    Enzo, my kids don't love wearing the masks, but as others have so eloquently said, it is for all patients' safety to do so. I know you feel conspicuous, but really most people are only briefly curious and then they go back to thinking about themselves. Human nature. You'll get used to wearing...
  12. 2

    Nitrous Oxide

    Jshet, I support what you said 100% and appreciate that your experience may not be ours. I didn't know nitrous is contraindicated (not 'contradicted,' btw) in CF and will bring up my concern if its use is ever proposed--so thank you! You did the right thing and should not be targeted negatively...
  13. 2

    Nitrous Oxide

    What a terrifying incident. Thank you so much for posting. Even if we Google treatments, the medical professional, in this case the dentist, in my opinion is responsible. My daughter needs to get her wisdom teeth out and her CF doc wants it done in the hospital. I thought that was overkill, but...
  14. 2

    My App for Cystic Fibrosis

    Congrats Salty! Want my two CF DDs to get this app. I looked at other CF apps and yours is very well done!!!!! Way to go!!!!
  15. 2


    Thanks for the book recommendation Ladybird. Just looked at the comments on Amazon that highly rate it. I'm ordering it!
  16. 2

    Should I ask for further testing?

    I suggest you go to Hopkins. We go to DC Childrens and are still in their pediatric CF program. While they have a certified adult program for those over 21, I think you'd be better served at Hopkins from what I've heard. Good luck and I hope you get some answers. Let us know how you're doing!
  17. 2

    Surprising Results with Essential Oils! Give it a Go!

    Salty, Thank you so much for sharing the good and the bad here. But more so, thank you for your passion to help the cf community and find alternative treatments to augment traditional medicine. Please keep posting your EO experiences and being 'salt and light.'
  18. 2

    new sibling of passed away CFer

    I'm so sorry! Hugs to you Fairygirl and to your parents too. Everyone grieves in their own way. CF affects the entire family, forever, and your brother was blessed to have you as his big sis. I hope you hold tightly to the sweetest of times with your brother, how he made your heart smile, and...
  19. 2

    Kalydeco gets approval for eight more mutations

    Mom24dodd: My 2 daughters with G551D (as one mutation) have been on Kalydeco for 2 years. They have not stopped any routine meds including enzymes. What it has done is make them more stable and neither had needed hospitalizations since. My one daughter was in the hospital every few months for...
  20. 2

    New to CF and confused

    Grandma4: Your grandson and his parents are blessed to have you! I have a concern about the docs ordering a chest CT because of the radiation. CTs have a lot more radiation than chest X-rays, though they show a lot more detail abt damage in the lungs. Maybe it's just me, but unless it helps your...