Search results

  1. L

    CF Vitamin Shortage

    Ditto on the AquaDEKs - I get vitamins free from CF Care Forwards...mail my receipt when I order my CREON from Caremark and they mail me two free bottles. I called them today (CF Care Foward) they are mailing out Aquadeks until shortage is over. I can tell a difference when I go off of...
  2. L

    looking for asst application for pfizer??? im out of tobi an hypertonic!!!!!!!!

    Call PSI and CFPAF...numbers are at You should be able to get them for free between your private insurance, PSI as secondary and CFPAF. Those are are un-insured, call CFPAF and ask them to help you navigate the free programs.
  3. L


    I've started doing Bikram "Hot"'s a 1.5 hour class in 105 degree helps with my joint pain. But I only do it once per week to avoid losing too much weight.
  4. L

    using netflix or blockbuster in demand in the hospital

    Also lets you dowlonad movies for 2/3 dollars a down load and you can watch them for 7 days. That's how I watched Eva Markvoort's 65 Red Roses, instead of buying DVD I paid 2 bucks on Amazon.
  5. L

    using netflix or blockbuster in demand in the hospital

    Here's a gives you first month free...sign up when you get admitted and cancel before you leave and won't get charged. If you are a hospital "frequent flyer" like me and get admitted a lot, just use a different debit card and e-mail and sign up multiple times, canceling each...
  6. L


    Iv's wipe me out physically and make be have "brain fog" ...the worst I've ever been on was oral Flagyll when I had C-diff caused by the antibiotics..made me vomit, dizzy, foggy, emotionally wacked out too.
  7. L

    Gross, embarrassing things that come with CF!

    Then you are extremely blessed, not all of us are as lucky to have such a mild case of CF. Best of luck, <3 Champ
  8. L

    Gross, embarrassing things that come with CF!

    Your 72 and arguing with someone on an internet message board....I have the sorry existence?
  9. L

    Gross, embarrassing things that come with CF!

    Actually Bill, I have an Associates Degree in Information Systems, and am currently enrolled at a private university here in Virginia working on a BS degree in Management and Organizational Development, would you like to see my acceptance letter? Before my CF, which is not mild, forced me to...
  10. L

    Gross, embarrassing things that come with CF!

    I guess we could list Printer/Bill as an annoying/gross thing that comes from CF?
  11. L

    Gross, embarrassing things that come with CF!

    Coughing spasms that come before you realize you are having one and sputum goes everywhere....have had this happen a few times, it's so embarassing.
  12. L

    Stay at home moms w/cf

    YAY! Love, (L) "Champ"
  13. L

    Stay at home moms w/cf

    Awww, you poor old, bitter, un-happy man... Hey! Maybe I will have the time also to sit in front of my computer and play on internet forums all day too!!!
  14. L

    RX assistance programs / General Assistance

    Over the years I have run across all kinds of "goodies" that have made my life much easier. Other than my doctor visits and admissions, I really don't pay for my meds, even the co-pays after my private insurance. I have compiled the below database and wanted to pass it along. Hope it helps...
  15. L

    Stay at home moms w/cf

    I'm not a mom, 27 year old male, who just made the work to non-work transition. I love it. I sleep in every my meds and treatments, without rushing, so nice, usually hit the gym everyday, I volunteer one day a week at the food bank, and ride and show horses. In my down time, I read...
  16. L

    The best airway clearance for me..

    I agree 100% IF I really get to laughing I can get some huge chunks up and start coughing. Bad part is I am always around friends when this happens, so am a little less apt to hack, gag and spit. But you are right, it really works.
  17. L

    Have Any DF508's Started the Third Phase of Trials Yet?

    My clinic was chosen as a site, and I have heard the same thing...feb/march.
  18. L

    DDF508 and pipeline drug trials (Kalydeco)~anyone been involved? Experiences

    Yes, I am DDF508. The drug is the drug combo of 770/809....Kalydeco and another drug. I am very excited. My doctor says even if this combo does not work, that within a few years she knows that there will be a drug that works for the rest of keep your kids compliant and put them in...
  19. L

    DDF508 and pipeline drug trials (Kalydeco)~anyone been involved? Experiences

    I will be in the study for this within a few months, my CF Care center was chosed for a clinical trial. I can't wait...The best part is even if I receive a placebo the last 6 weeks of the study everyone is on the drug...will keep you posted!
  20. L


    Just some words of hope to those applying....I had my interview on Nov. 1 and checked my bank account today and my payment was there...I was approved on the first try. So don't get discouraged it does happen. I used Beth Sufian's office they were amazing, we began the process in August with...