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  1. J

    Have a little fun question for your worst day being hospitalized

    Worst day is Day 2, drugs have kicked in and I'm officially feeling like crap, plus they are usually putting the picc in that day. Best day is 2 days after the picc is pulled and I get a real shower for the first time in weeks!
  2. J

    Picc line back up

    Usually means you didn't clamp it off. Unless you have one of those fancy ones that are supposed to self clamp. Just flush it, as suggested above.
  3. J

    So frustrated about telling my non cf friends about cf

    I find most healthy people don't understand it. Im 30. I go to clinic 3 hours away. For regular healthy visits I go by myself. When I'm admitted or think I might be admitted, a parent will drive me over. They usually don't stay and only come back on weekends. Regular people think this is...
  4. J

    fired for work restrictions

    Chances are you used up your FMLA time. You get 12 weeks, usually in a rolling 12 month period. If you use up your time and cannot return, they are allowed to term your employment. If this is the case, you should qualify for unemployment. You might still want to talk to a lawyer about...
  5. J

    Summer Activities with a PICC line

    When I was younger my mom would hook me up in the morning before I woke up, and I while I was sleeping at night. I would imagine with one so little letting them watch a show and sitting and having lunch would be a good way to kill the time. You could probably get away with the sprinkler or...
  6. J

    Disclosing CF to an employer, anyone know?

    I'm in human resources and have cf. don't tell them in the interview. I would actually wait until hospitalization before saying anything
  7. J

    IV therapy at home/PICC question

    I just had a line placed as well, I am always awake. It's no big deal, just turn my head so I don't see. The person placing it always chats to you the whole time. When I was younger, 14 when I had my first, they would put me under the whole way. The hard part about that is it takes going...
  8. J

    Where to start

    I just wanted to say congrats and it sounds like you are doing a fantastic job already! One thing, as a cf "kid", I thought I would say. Don't let the cf stop him from doing any of the activities your other kids do. Sports and playing outside, being physically active is great for cf'ers. I...
  9. J

    HELP - Daughter can't breath after 2.5 minute competitive cheer routine-what to do?

    I have to say I'm with bill on this one. Exercise and doing what you enjoy is important, but you shouldn't be putting your health at risk to do so. There will come points in her life she will have to not do the things she wants because of this disease. It sounds like she is coming very close...
  10. J

    Help Insurance Question!

    You need to talk to your hr person, they should be able to ind ou specifically how it woul pay. I am in hr and my hdhp worked like autumns but there is no guarantee, so find out for sure!
  11. J

    Pseudomonas Aeruginosa 2 ?

    Hi, I recently saw the results of my sputum sample, and besides the usual Pseudomonas Aeruginosa, it also shows Pseudomonas Aeruginosa 2. I go back to the Dr in 2 weeks, am already on Cipro, which the culture shows it is sensitive to. I'm not worried about the treatment, just curious if anyone...
  12. J

    20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?

    Doug- I also have 2 df508, genes can't tell you how the symptoms might occur. I am 30 years old, have a bachelors degree and work full time in human resources. I was raised without a clue tht cf should limit me. I of course figured that out eventually, but wasn't hospitalized until high...
  13. J

    Nebbing questions

    To add to Bill's suggestions: Take a deep breath, hold your breath at the top and huff of the way down, so that if you have a wheeze you can hear it.
  14. J

    Nebbing questions

    To add to Bill's suggestions: Take a deep breath, hold your breath at the top and huff of the way down, so that if you have a wheeze you can hear it.
  15. J

    Barriers to your care?

    I find it is not only "not having enough time" but not having the energy in the time that I have. If I could work less I could get more rest, do better treatments day and night. Now I skip in the evenings all together, and go to bed at 8pm exhausted.
  16. J

    Barriers to your care?

    I find it is not only "not having enough time" but not having the energy in the time that I have. If I could work less I could get more rest, do better treatments day and night. Now I skip in the evenings all together, and go to bed at 8pm exhausted.
  17. J

    Yoga?

    I really enjoy yoga. The stretching moves your chest and ribs in ways they usually wouldn't. Some of the stretches hit my lungs in such a way, I do them during my hypertonic saline now. I also like that my yoga instructor is very understanding that some of us go at different paces.
  18. J

    Yoga?

    I really enjoy yoga. The stretching moves your chest and ribs in ways they usually wouldn't. Some of the stretches hit my lungs in such a way, I do them during my hypertonic saline now. I also like that my yoga instructor is very understanding that some of us go at different paces.
  19. J

    doc and I disagree

    How old is your air compressor? I finally got a new one, after 12 years and it helped decrease the time the drugs were taking. Tobi ~25 HyperSal~20 Pulmo~ 15
  20. J

    doc and I disagree

    How old is your air compressor? I finally got a new one, after 12 years and it helped decrease the time the drugs were taking. Tobi ~25 HyperSal~20 Pulmo~ 15
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