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  1. M

    Make your hospital bed more comfortable!!

    Your own pillow and soft blanket can make a world of difference too. Just make sure they are not white, or you may lose them.
  2. M

    Need to know the best hospitals for tansplant

    I second Duke. They are excellent.
  3. M

    Right Heart Catheterization

    Kenna2, Better to get it all done now rather than later when you are feeling even worse. The heart cath, in my experience, was no problem whatsoever. My insertion site was in my groin, so they shaved half of my pubic hair. Yes, HALF. *snicker* I guess there's a first time for everything...
  4. M

    My 7 years daughter is recently diagnosed to have CF

    Adding Budesonide to the saline nasal rinse really seems to help with polyps.
  5. M

    CF related diabetes

    I'd like to reiterate what Kenna2 said; your numbers are not that high at all. Eat the food you need and insulin for it, conservatively on weight training days. And 200 is not that high. I will go up to 450 if I dont keep a careful eye on things. (darn that prednisone!)
  6. M

    Knowing when it's time?

    Kyeev, A bit of a lag since my last writing here in August! I was listed at Duke in October and got my transplant 12 days later. So far its been an up and down road. A fungus that they didnt know about was in my old lungs and got transferred to my new lungs during the transplant process...
  7. M

    Did you always know you wanted one?

    I always knew that I would want a transplant. That being said, I I've spent most of my life working very hard to prevent one! But the writing was on the wall last August with an 18% FEV1 and I got my refurbished lungs in October. Yes, it has been a hard road. Yes, I've had complications...
  8. M

    Low Oxygen Saturation After Albuterol (Infant)

    After using albuterol for decades, I got to the point where is was causing SOB and low sats and I could no longer tolerate it. Granted, I could not tolerate any other inhaled medication at that point either except simple saline. I could tolerate Advair however.
  9. M

    Am I 9 months old or 19 years old?

    I started having pretty bad incontinence in my twenties, due to coughing. Pelvic floor muscle exercises did not help me because the coughing was so intense. (I broke 2-4 ribs many times on both sides from coughing so hard) You might want to try Poise pads, the moderate or heavy type. Panti...
  10. M

    Any experience with Scedosporium proliferans?

    Just wondering if anyone has some experience with treating this. Apparently I was infected pre-transplant (and didn't know it), and it transferred over to my new lungs. :mad: I'd especially be interested in folks who were dealing with it post-transplant, but that's probably a pretty darn...
  11. M

    Double Transplant for CF?

    However, they cant transplant your sinuses too, so get them in tiptop shape prior to transplant if you can. I also wanted to mention that when transplanting the entire system, it is not a given that you get ride of the nasty germs. I apparently had scedosporium (sp?) prolificans in my old...
  12. M

    Orkambi effectiveness in terms of corrected protein count?

    So Kosdancer, what went on in the people who had a bad reaction to Orkambi and significantly decreased their FEV1 and FVC?
  13. M

    FEV1 Testing Concerns

    At a well-known post and pre-lung transplant rehab clinic a lot of the PT's just pass the same pulse ox on down the line of patients. Drives me batshit, and yes I have spoken up about it, as have others. The response? If you dont like it, go wash your hands afterwards.............
  14. M

    Got new lungs

    Hey guys. As some of you know, I relocated to Durham on Sept. 11. Got the call and was transplanted on October 12th, now back home and into rehab. ;)
  15. M

    eflow rapid Bottle Sterilizer advise

    I love my WABI. It has a dryer.
  16. M

    Feeding tube advice

    I dont have any advice for dealing with a g-tube in such a young one. But I do know that nutritional status is well correlated to long-term pulmonary well-being, so if there is any question that your son is not getting the nutrition he needs, I would do it.
  17. M

    Unexplained Decline

    Have his blood sugar checked. When I developed CFRD, it was very hard to catch because it did NOT show up in my A1C, and becaue my clinic appts were always just before lunch, I hadnt eaten in hours and my blood sugar had plenty of time to nomalize, so my non-fasting BS was just fine. However...
  18. M

    Should I send my 18mth old to a preschool or keep him home?

    I know that my youngest child, at 22 months, was begging us to go to preschool from 9-noon. She'd watched her older sister go to school, been there at pickup, saw all the other kids, and really really wanted to go. We told her that she could only go if she were potty trained. (thinking that...
  19. M

    Knowing when it's time?

    Kyeev, I am not listed, yet. You have to do a month of rehab at Duke and educational classes. Since the initial testing I did was more than a year ago, I have to redo a lot of it over the next couple of weeks. After all that, there is still no guarantee of listing. However, once I get...