Search results

  1. R

    Vanderbilt Pulmonary clinic in Tennesse anyone use them

    I am thinking seriously about switching clinics. I can never get my drs to call back or communicate with me after I leave their office.It will be a 5 hr drive though so I need it to be worth it.
  2. R

    Orkambi drug interactions that were not listed

    Anyone have a interaction with Orkambi that a was not listed in their interactions list. If so what is it?
  3. R

    For people taking Orkambi

    I started orkambi 9/3 been on it for 11 days. I went into the hospital for iv antibiotics because I knew it would be rough if I didnt. I am doing ok so far. I am tired, but i get that way on iv's so can't say that's orkambi. I do have acid reflux. I'll have to get my dr to up my meds. I have...
  4. R

    For those taking has it impacted you?

    I went to my clinic appointment today. I got all my orkambi paperwork done. My doc said Arkansas medicaid will not even think about paying until after the october meeting they are having. I also got put on the transplant list. My fev1 is only 30 now. I didnt think you could get a transplant...
  5. R

    Anyone else have DILD from Ceftaz or bactrim

    I have some type of inflammation type reaction and wheezy breathing, coughing up blood after a few days of being on the drug( ceftaz and bactrim). I rarely cough up any blood, unless I have had a cold and that's most likely from my throat being raw. The Ceftaz is the only drug that can treat...
  6. R

    Anyone else have trouble with RT's while in hospital

    My hospital stay went great this time around. The RT's were great let me do my nebs on my own without them standing over me. Their food wasnt great but plenty of it. The nurse's were awesome, all of them. It was weird this time though they took out my pic line an day 10 and let me go home. I...
  7. R

    What do you take with you when admitted!

    Powerstrip cord awesome idea! and plastic bags theirs don't have a tie string to tie to the bed.
  8. R

    Anyone else have trouble with RT's while in hospital

    The last time I was in for a bowel obstruction I had trouble with the respiratory therapist treating me like I was a child. I was nauseated the whole time I was in. It is really hard to do treatments on their schedule when you're puking. She got really hateful with me if I hadn't been so sick at...
  9. R

    Reaction to Bactrum - Alternative suggestions?

    Just from my experience each time I received bactrim the side effects were worse. Mine were severe lung inflammation and coughing up blood ,anxiety. From what I've read it was called drug- induced lung disease. CF doc put me on steroids and in about a month the inflammation got better.
  10. R

    What do you take with you when admitted!

    I am a bit of a fabric hoarder myself,but have been too sick too make anything for my grandbabies. Hopefully I'll be better when i get done with this round of drugs
  11. R

    What do you take with you when admitted!

    I probably will too Oboe. I can hope though, that I will care about decaf coffee and the crappy food.
  12. R

    What do you take with you when admitted!

    I want to take my coffee pot( a one cup) . All they have in there is coffee with caffeine. It makes me crazy, cant sleep at all. I have decaf & I am taking my coffee pot. It will make my stay a lot easier. That is if the meds don't make me have chills and fever like last time. What does everyone...
  13. R

    Jeannie or someone set up petition for FDA comment?

    I'll sign it I'm DDf508. I am at a 35 on PFT's. All the antibiotics that the bugs are sensitive to I am allergic to. Any one else have this problem?
  14. R

    Didnt culture MRSA this time why do my lungs feel worse

    I've cultured MRSA since 2010 I could tell it was there , but my last culture it didnt show up. I have been on oil of oregano on a month off a month for 3 months . I have Cepacia too . Ive had it a long time. I feel worse than before. Do the bacterias fight each other? Did the cepacia win and...
  15. R

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    So far the levaquin and vanc help . I have more mucus since the MRSA & more inflammation
  16. R

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    I have had B cepacia for a long time . I started culturing MRSA in 2009 and have been having more problems since it came along.
  17. R

    does anyone take oil of oregano every day

    I'll stop taking it after Im over this strep throat again. I take mine in capsule form
  18. R

    does anyone take oil of oregano every day

    I have been told by the guy at the health food store not to take oil of oregano all the time , but I don't think he quite understands my circumstances. Does anybody take it full time. It helps with the inflammation a lot and my sinuses.
  19. R

    What's your experience with Cayston?

    Does cayston work on cepacia or mrsa. I could use some help. I am on rifampin ,cipro, doxycycline right now . Only 3 more days of hell on my stomach and Ill be off of them. The drs think the mrsa is whats giving me problems.
  20. R

    Questions about PharmaNAC regarding CFRD

    That is awesome !!