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Thread: What is considered disease progression?

  1. #1
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    What is considered disease progression?

    Just wondering what is considered disease progression. This past year she has had to go to doing four vest treatments daily due to congestion and she was in the hospital last March and now again but this time she is severely congested and she had a endoscopy done and they expressed about how she had extreme mucus build up and restated that several times. Isn't that normal for CF'fers? Or is this a sign that her disease is progressing? And is this normal for when a child about to go through puberty? or is there a norm? Or is this the normal for MRSA growth deep in the lungs? Just so many questions.

    Mom to Whitney ddF508del

  2. #2
    Which medicine she is on these days
    From Pakistan Mother of a baby girl (born 25-10-2011) having DDF508.

    http://www.facebook.com/iam.nini.3

  3. #3
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    Hospital PICC line: Cefapime runs 4 hrs, Benedryle for Vanc, then Tobramycin runs 30 mins, then Vanc runs 2 hours then all rotate every 8 hours, then all her normal home meds Albuterol 4 day daily, Pulmozyme in am, Hypertonic 7% 4 times daily, Creon 24,000 2 with breakfast, lunch & snacks & 3 with dinner, AquaAdeks once daily, Zantac, Nexium, Singulair, Vit D 50,000 every 7 days, Claritin, Astelin nasal spray & Nasonex, Stopped while in the hospital Tobi & Azithromycin M,W,F, & Cayston.

  4. #4
    sounds like progression to me.

    I'd be more concerned with lung scarring though. That is the true test of progression , mucus can be cleared out.

    You mentioned her doing lots of vest treatments, is she coughing?

    So far no medicine is available to clear the congestion, just thin it and fight the bacteria. Personally, I find exercise much more helpful in forcing a cough. I do a multitude of vest treatments as well but I really have to work at coughing it out compared to exercise where it just comes natually.

  5. #5
    What is her history of her FEV1's. Is there a serious decline over time?
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

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