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  1. M

    Pain in belly during pt

    Anyone ever have bad pain in their lower pregnant belly while vesting or coughing? If so, did anything help? It seems similar to what people describe as round ligament pain. This is my 3rd pregnancy so I'm thinking perhaps things are just more 'stretched' out? I remember having occasional...
  2. M

    Feeling worse on Cayston

    I always have issues with cayston. Not to the point where id say I'm contraindicated..but wondering if anyone else falls in this category. My lungs are at a really good place right now. I'm on cayston currently. The day I start it, I feel tighter, I feel more soupy, at night. I feel just not...
  3. M

    Rash after DC Antibuotics?

    Has anyone ever gotten a rash on their body after they've stopped antibiotics? I stopped my IV regimen of Imipenum, Vancomycin, and Tobramycin on Monday. Its the first time I've had this cocktail. I had no side effects of the skin for the 3 week duration, but Tuesday I woke up with a mild itchy...
  4. M

    Any Homeschooling/cyberschool parents with cf?

    Hi, I'm wondering if there's any parents with Cf, doing school at home with their kids? We are strongly considering cyber due to the consistent routine and teacher support. Any tips on how you manage it all, and still maintain balance, downtime, etc, would be helpful. Also, during your doctor...
  5. M

    Severe asthma causing more trouble than typical exacerbations

    I'm wondering if anyone else can relate to this and provide some insight. Over the past few years, I get an asthma response to most infections and viruses that ends up causing more trouble than the infections themselves. I guess it's a question of which came first, chicken or egg? My non cf...
  6. M

    Bleeding on Cayston

    I'm wondering if anyone else has experienced mild hemoptysis (bleeding) while on cayston. Do you just deal with it? Did your doctor determine that it should be stopped? Any theory as to why it causes bleeding? i seem to always have some type of streaking associated with cayston. Is it just...
  7. M

    Running in Cold Temps

    Can any runners comment on how well, or not well, they deal with cold temps? I have an upcoming race in Feb but thats in FL. To prepare for that race, I'm considering a shorter one in Central Park, nyc in Jan, with my family. My immediate reaction is "I can't run in cold weather!". But if you...
  8. M

    809/661 thread not working

    Is it just my computer? I can only see 5 posts and then it cuts off...I see on the forum page that hmw posted last, but its not visible. This seems to be happening alot lately-I wonder if its everyone or just my computer?
  9. M

    Supporting someone DX later in life

    For those of you who've been diagnosed later in life (over 30, say) how did you cope with it? What could I do to support someone who is Dx later in life? Its hard for me to think of the emotions that a person would go through. I was dx at 1.5 yrs old. Its all I've ever known. What about when...
  10. M

    Doing cayston on the go

    Currently doing month on/month off Cayston. Figuring out how to handle it when I'm out is tough. There's alot of conflicting info on how to sanitize properly, how long is ok to wait before cleaning the Altera, etc. The CFF's Altera cleaning video and Cf pharms instructions state washing with...
  11. M

    Gas/stomach woes from NAC

    I started taking fizzy NAC again. I've been having insane gassiness and just an uncomfortable feeling...ugh. I was wondering if I'm the only one to experience this and if I should expect it to get better with time. I really don't want to feel this miserable long term.
  12. M

    The HORRIBLE winter virus and IVs

    Who else has gotten the winter virus going around? Severe respiratory symptoms, a cough that just hangs on and on. I know of dozens of people, some healthy average people that been landed in the hospital bc of this thing. A few in my family for example had the cough extremely bad (sounded over...
  13. M

    PICC line arm pain

    Anyone ever have this?<br>I'm wondering if my PICC could be laying on a nerve or something. To be clear, I don't have any pain at the site, or swelling, or hotness, or fever. So its not an infection. <br>From day one, I'm getting this pain running from the back of my elbow area all the way to my...
  14. M

    Cruising with CF

    ....and 2 adults, a 5 yo, and a 1 yo baby??<br><br>We are bringing my parents on a mediterranean cruise for their 50th anniversary next year. We have a standard size cabin booked. So y'all know how big a vest is, plus hoses, plus nebs...will I be able to fit all this in the room? Would I be able...
  15. M

    Getting my kids used to mommy's IVs

    This is the first tune up I've had where my DD who is now 4 actually understands and talks about what's going on. Boy was I surprised at the amount of detailed questions she has!<br>In the end, a simple explanation is getting through to her. Recently she had a bad cut on her leg, and I put...
  16. M

    Know of anyone with more than 2 kids?

    so? anyone?
  17. M

    Nursing Moms-what has helped u?

    Tomorrow I go for my PICC. First post-preg tune up since having DS. (he's 6 months) I did nurse DD while on IVs, but that was 4 yrs ago, and it was only a couple weeks. Honestly it feels like centuries ago, I can barely remember it!<br>Of course now I have an active 4 yr old on top of it, so...
  18. M

    Women-pain around ovulation

    I'm getting my period back again, since having the baby.<br>Prior to that, almost every month I would get pain in my right side every month around the time I'd ovulate (2 weeks or so before my period). <br>It got to be so frequent that last year, I went for a full workup. CT, ultrasounds. They...
  19. M

    Cayston in Disney World

    I won't even go into how irritated I am that it worked out this way. Whatever.<br><br>So-how have you families done it? Do you go back to the room? Do you go to the first aid center? Do you sit on a bench?<br>Do you bring a sterilizer with you-or use the microwave to boil water? I was wondering...
  20. M

    Parenting with Cf

    Yesterday I was getting out of my car and heading into my house after a long day of errands with a 4 month old and a 4 yr old. I did my first neb of the p.m. treatment in the car to save a few minutes. As I'm walking into the house I almost had an out of body like experience, where you see...