Cystic Fibrosis Forum (EXP)

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  1. J

    negative genetic testing, two postive sweat tests

    Hi.... I was the misdiagnoses queen. I was diagnosed with CF at age 29 via three positive sweat tests but also have a disease called Addison's disease which can cause false posituve sweats when the diesease is not properly controlled. My whole life I had chonic cough, bronchitis, pneumonias...
  2. J

    Sudden rapid heartbeat?

    Oddly enough I am having a high heart rate 100-140's and high blood pressure. I had to go to urgent care and get an EKG because they were concerned with a fib since I just got a device in my heart...my heart rhythm looked good just fast.... They put me on lopressor twice a day...my blood...
  3. J

    Sudden rapid heartbeat?

    Oddly enough I am having a high heart rate 100-140's and high blood pressure. I had to go to urgent care and get an EKG because they were concerned with a fib since I just got a device in my heart...my heart rhythm looked good just fast.... They put me on lopressor twice a day...my blood...
  4. J

    Daptomycin Help"

    I am on week three of a six to eight week treatment of Daptomycin for sepsis and bactermemia. Has anyone on here been on this drug before? I am concerned with a few things. One in the PDR it says the stability of the Daptomyacin is on 48 hours once it is reconstituted which means the drug is...
  5. J

    Daptomycin Help"

    I am on week three of a six to eight week treatment of Daptomycin for sepsis and bactermemia. Has anyone on here been on this drug before? I am concerned with a few things. One in the PDR it says the stability of the Daptomyacin is on 48 hours once it is reconstituted which means the drug is...
  6. J

    IV zyvox vs oral

    Oral and IV have the same exact bioavailability . I however could not tolerate oral Zyvox and had tomdo it IV ....I am resistant to Zyvox now! Ugggg
  7. J

    IV zyvox vs oral

    Oral and IV have the same exact bioavailability . I however could not tolerate oral Zyvox and had tomdo it IV ....I am resistant to Zyvox now! Ugggg
  8. J

    Low oxygen saturation, good pft's?

    Yes I did I had unexplained hopxia. Good Pfts but required oxygen all the time . It was found that I had a hole in my heart with a lot of shunting which caused my blood to mix and give me low oxygen. They recently fixed the hole in my heart and my sats are back to normal....minus the fact I went...
  9. J

    Low oxygen saturation, good pft's?

    Yes I did I had unexplained hopxia. Good Pfts but required oxygen all the time . It was found that I had a hole in my heart with a lot of shunting which caused my blood to mix and give me low oxygen. They recently fixed the hole in my heart and my sats are back to normal....minus the fact I went...
  10. J

    MediCARE participants who receive home infusion services

    I get home infusions on Medicare...I have since Feb without issues...I wonder if it is because I have special assistance. I am so sorry. Jenn I no longer have my port...I went septic after my PFO closure and I have a lot of huber needles could you use them? I would be happy to send them to you...
  11. J

    MediCARE participants who receive home infusion services

    I get home infusions on Medicare...I have since Feb without issues...I wonder if it is because I have special assistance. I am so sorry. Jenn I no longer have my port...I went septic after my PFO closure and I have a lot of huber needles could you use them? I would be happy to send them to you...
  12. J

    Resistant Strains

    I have resistant staph epi in my blood stream and possibly in a newly placed heart closure device. The only antibiotc that showed sensitivity is Daptomyacin! Not fun.
  13. J

    Resistant Strains

    I have resistant staph epi in my blood stream and possibly in a newly placed heart closure device. The only antibiotc that showed sensitivity is Daptomyacin! Not fun.
  14. J

    To the "chubby" CFers

    To the I am overweight!!!! I have been on steroids for years and years!!!! Innate it..I have a cushionoid appearance skinny arms and kegs very chubby belly and face. I am on Pancreaze also and all my vitamin levels are low...I am tricky..need to,eat less carbs and more protein!
  15. J

    To the "chubby" CFers

    To the I am overweight!!!! I have been on steroids for years and years!!!! Innate it..I have a cushionoid appearance skinny arms and kegs very chubby belly and face. I am on Pancreaze also and all my vitamin levels are low...I am tricky..need to,eat less carbs and more protein!
  16. J

    PICC line

    I just had a PICC in and it was too far they pulled it back to the SVC.
  17. J

    PICC line

    I just had a PICC in and it was too far they pulled it back to the SVC.
  18. J

    WWYD

    So not worth the risk! IMO
  19. J

    WWYD

    So not worth the risk! IMO
  20. J

    How awesome is your doctor?

    National Jewish is five stars..ten stars. Dr Nick is over the top..emails back on vacation instantly. Smart, thinks outside the box proactive. He is my hero in a doctor..he is too far to see all,the time but I will see him at least once or twice a year or more if i progress, less if I dont My...
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