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    Your own pillow and soft blanket can make a world...

    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. I second Duke. They are excellent.

    I second Duke. They are excellent.
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    Kenna2, Better to get it all done now rather...

    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...
  4. Adding Budesonide to the saline nasal rinse...

    Adding Budesonide to the saline nasal rinse really seems to help with polyps.
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    I'd like to reiterate what Kenna2 said; your...

    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...
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    Kyeev, A bit of a lag since my last writing...

    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...
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    I always knew that I would want a transplant. ...

    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...
  8. After using albuterol for decades, I got to the...

    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...
  9. Forty-six.

    Forty-six.
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    I started having pretty bad incontinence in my...

    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...
  11. 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...
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    However, they cant transplant your sinuses too,...

    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...
  13. So Kosdancer, what went on in the people who had...

    So Kosdancer, what went on in the people who had a bad reaction to Orkambi and significantly decreased their FEV1 and FVC?
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    At a well-known post and pre-lung transplant...

    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...
  15. Thread: Got new lungs

    by mom2two
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    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. ;)
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    I love my WABI. It has a dryer.

    I love my WABI. It has a dryer.
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    I dont have any advice for dealing with a g-tube...

    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...
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    Have his blood sugar checked. When I developed...

    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...
  19. I know that my youngest child, at 22 months, was...

    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...
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    Kyeev, I am not listed, yet. You have to do a...

    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...
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    Hi Kyeev, Sound similar to me. Duke actually...

    Hi Kyeev, Sound similar to me. Duke actually just gave me the go ahead a few weeks ago for relocation and transplant, and here I sit in Durham, waiting for my first class tomorrow! I'm actually...
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    Transplant time

    Headed to Duke in 2 weeks to start the transplant process. They said it was time and I shouldn't wait any longer. If you have any words of advice or wisdom, I'd love to hear it. thanks a bunch.
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    Hey Sarah, Have you had any other indications...

    Hey Sarah, Have you had any other indications that it might be the Orkambi that is causing this? Any other changes in your health?
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    I'd add wearing a mask on public transportation...

    I'd add wearing a mask on public transportation (bus, train, plane) and getting the QUAD flu shot in early sept and then again in January.
    Yep, rest is critical. Not skimping on sleep at night and...
  25. Thread: Tune up

    by mom2two
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    You'll get the hang of it pretty quickly. Just...

    You'll get the hang of it pretty quickly. Just make sure you follow sterile procedure. Ports are so much nicer to have at home than regular IV or PICCs. There are also some terrific Utube videos...
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