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  1. dbtoo2

    Hypertonic Saline Backordered

    Yes. Pharmacy decided to swith me to 3% normal saline for injection in 15ml vials, as if it was the same thing! Then they lied about it and said it was what the doctor had ordered for me. I've been told there is a 3.5% hypertonic solution available.
  2. dbtoo2

    do you have medicare and are on trikafta?

    I signed up at https://copays.org/portal/#/login 'register' to apply and create an account. I haven't tried to get a reimbursement yet, I'm just getting things set up for next year.
  3. dbtoo2

    Creon vs Zenpep

    i've done much better on zenpep. creon gave me several bouts with fibrosing colonopathy and constant bloating. zenpep is much better. understanding the fat contents of what you are eating and how many pills of which strength to address the fats consumed is of great importance. i have two...
  4. dbtoo2

    We remember Jazzysmom. 5 years

    :cry:
  5. dbtoo2

    do you have medicare and are on trikafta?

    What insurance plans are you on that cover trikafta while on Medicare? Or did you give up Medicare to take a separate policy?
  6. dbtoo2

    Trikafta with no purge???

    been on trikafta for almost a year, no purge.
  7. dbtoo2

    Am I tired of this work?

    Thank you Imogene!
  8. dbtoo2

    Beth Sufian's guide to insurance

    The link no longer was working
  9. dbtoo2

    Abilify and Trikafta?

    what does the PDR day about abilify . An austistic child my not be capable of voicing concerns when they've experienced side affects! kalydeco is in the PDR. but not trikafta yet.
  10. dbtoo2

    Inhaled Tobi vs. Tobramycin

    Ask the Dr to mark your perscription for TOBI as 'medically necessary' 'dispense as written'. The insurance company and state laws allow for the substitution of drugs for generics if they don't mark it as dispense as written. i've found the generic tobramycin, depending on the manufacturer...
  11. dbtoo2

    High Cholesterol on trikafta?

    I have a similar experience. Dizziness too!
  12. dbtoo2

    Scared about the future?

    what if tomorrow comes? What if tomorrow comes? All your life you're told, that you will never grow too old. Your life defined by a DNA strand, mutated uncontrolled. "Don't expect to be able to do, like others without this disease." "You can't", "You shouldn't", "You must not", of these we...
  13. dbtoo2

    Looking for CF doctor in Southwest Florida

    Dr. Daniel Layish - Orlando Fl. - http://www.cfpulmonary.com/services/cfpg-adult-cystic-fibrosis-center/ Tell him his 60 yr old non-compliant obese cf patient sent you (That's what TGH Tampa CF Clinic said about me when they refused me to come to their tampa clinic.) Dr. Layish has been...
  14. dbtoo2

    Creon 24

    Here is a description of "Zenpep (pancrelipase) is a combination of three enzymes (proteins): lipase, protease, and amylase. These enzymes are normally produced by the pancreas and are important in the digestion of fats, proteins, and sugars." Opinion Only! - Yeah, it was 'common' that the...
  15. dbtoo2

    Change in prescription category for Creon

    try switching to zenpep switch to Zenpep. looks like it should be on the formulary. ok, the link didn't work... https://www11.anthem.com/ca/pharmacyinformation/
  16. dbtoo2

    Nebulized Tobi vs. Tobi Podhaler

    podhaler is really great to get for traveling!
  17. dbtoo2

    Oldest Person With CF

    It wasn't the CF clinic, it was a local radiology place, which probably has some 3rd world staff read the xrays...
  18. dbtoo2

    Oldest Person With CF

    I recently had a sinus CT scan, requested by my CF Doc to 'eliminate the possibility of polyps in a 58 year old with cystic fibrosis'. The moron who read the xray wrote in their dx that it couldn't be related to CF because people with CF don't live that long. ... what a moron...
  19. dbtoo2

    job implications from CF

    Opinion only... Your mileage may vary... I ran into this type of question when I was about 19. I had worked in a couple of factories, dirty places with welding, glues, paint and such, and it didn't have a great impact on my health (it didn't hurt me either at the time.) I then worked for an...
  20. dbtoo2

    Importance of online communities

    I found this forum in the nick of time, I felt for sure I'd lose my mind. I thought compassion was what I'd find. Instead I found reality. I thought you'd share my hurt and fear, Encourage my heart and hold me near, Coddle my needs and treat me dear, Instead I got the truth. I asked a...
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