Cystic Fibrosis Forum (EXP)

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  1. M

    PFT Goal's thread. Trying to achieve 60% FEV1.

    *NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1. I'm just going to throw this out there, but are you concerned this might be overkill. You seem to be bombarding your lungs with many treatments at the same time. It appears you've done quite a bit of research about the medicines and...
  2. M

    What song do you relate your CF fight to

    I've always been inspired by "Right Now" by Van Halen. We may not have a tomorrow so we have to live for today. Mark, age 43.
  3. M

    has anyone else gotten mixed up while in the hospital

    I haven't had any major issues with med mix-ups. The thing I notice is that sometimes the nurses tend to delay the time I get my meds (insulin mainly) and I have to call them repeatedly. Or they don't have the pills I need when needed. I am diligent about checking things and reminding them what...
  4. M

    has anyone else gotten mixed up while in the hospital

    I haven't had any major issues with med mix-ups. The thing I notice is that sometimes the nurses tend to delay the time I get my meds (insulin mainly) and I have to call them repeatedly. Or they don't have the pills I need when needed. I am diligent about checking things and reminding them what...
  5. M

    Good gift for some people with CF

    <P>For Christmas yesterday, I got a set of wireless headphones that connect to the TV. Now I can actually hear the TV while I do myVest treatment without having to blast the volume on the TV. Nor do I have to use the closed-caption feature on the TV. Although I did get used to reading and...
  6. M

    Good gift for some people with CF

    <P>For Christmas yesterday, I got a set of wireless headphones that connect to the TV. Now I can actually hear the TV while I do myVest treatment without having to blast the volume on the TV. Nor do I have to use the closed-caption feature on the TV. Although I did get used to reading and...
  7. M

    Cruising with CF

    My wife and I went on a cruise about twelve years ago, before kids, and I remember the cabin and the bathroom being rather small for just the wife and I. We were in a standard room on the Carnival Cruise line. I only took my nebulizer and no vest. That's my memory of the room on our trip. Good...
  8. M

    Cruising with CF

    My wife and I went on a cruise about twelve years ago, before kids, and I remember the cabin and the bathroom being rather small for just the wife and I. We were in a standard room on the Carnival Cruise line. I only took my nebulizer and no vest. That's my memory of the room on our trip. Good...
  9. M

    I want to know what percent of CFers work

    I worked full-time for about 18 years until my FEV1 started dropping. When it dropped to the 30's, that's when I decided to quit woking. Mark
  10. M

    I want to know what percent of CFers work

    I worked full-time for about 18 years until my FEV1 started dropping. When it dropped to the 30's, that's when I decided to quit woking. Mark
  11. M

    I want to know what percent of CFers work

    I worked full-time for about 18 years until my FEV1 started dropping. When it dropped to the 30's, that's when I decided to quit woking. Mark
  12. M

    Doctor with CF passed away; inspirational story

    <DIV class=ObitTextPhoto><A id=ctl00_ctl00_ContentPlaceHolder1_ContentPlaceHolder1_ObituaryTile_ObitCameraIconPhotoGalleryLink target=_blank></A></DIV>(News Article) Dr. John Thomas Schaeufele, 57, president and chief executive of Mercy Children's Hospital, whose own childhood illness spurred...
  13. M

    Doctor with CF passed away; inspirational story

    <DIV class=ObitTextPhoto><A id=ctl00_ctl00_ContentPlaceHolder1_ContentPlaceHolder1_ObituaryTile_ObitCameraIconPhotoGalleryLink target=_blank></A></DIV>(News Article) Dr. John Thomas Schaeufele, 57, president and chief executive of Mercy Children's Hospital, whose own childhood illness spurred...
  14. M

    Doctor with CF passed away; inspirational story

    <DIV class=ObitTextPhoto><BR><A id=ctl00_ctl00_ContentPlaceHolder1_ContentPlaceHolder1_ObituaryTile_ObitCameraIconPhotoGalleryLink target=_blank></A></DIV>(News Article) Dr. John Thomas Schaeufele, 57, president and chief executive of Mercy Children's Hospital, whose own childhood illness...
  15. M

    pre-trans quality of life

    I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital...
  16. M

    pre-trans quality of life

    I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital...
  17. M

    pre-trans quality of life

    I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital...
  18. M

    B cepacia - nanoemulsion solution

    I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I...
  19. M

    B cepacia - nanoemulsion solution

    I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I...
  20. M

    B cepacia - nanoemulsion solution

    I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I...
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