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  1. J

    Trikafta with no purge???

    So far, I have taken 3 doses of Trikafta and am not experiencing any mucus purge. Has anyone else experienced no purge? I have been drinking water, eating fat with pills, and I am a ddf508.
  2. J

    Speed Bump

    So you know the saying, "I live life in the fast lane, but my wife is a speed bump?" That is my husband and I. Today my husband said that he still loves me, but he doesn't like being around me anymore. Now before you get mad at him, understand what he's feeling. We have been married for 20...
  3. J

    When will pharmacies begin carrying Tricafta?

    Is anyone received Tricafta since it has been approved, besides for compassionate use and actual drug study? When is it anticipated that pharmacies will have it?
  4. J

    Insurance Rules Can be unhelpful for CF

    So, a week ago I did not drop below 88% for my 6-minute walk, which was good in a sense, but all it meant was that I was having a good day. Today, I have been short of breath quite a bit. Luckily, Norco hasn't come to take my oxygen away yet but it will happen. I just wish other people...
  5. J

    Seems like some positive health care news

    The headlines of articles stating that the Senate healthcare bill has failed due to senators saying they would vote no, made me feel very happy. (Although their are reasons for saying no are not necessarily in our favor.) Then I just read that at least three senators said they would vote no on a...
  6. J

    Exercise vs avoid public pools

    So, my FEV1 is in the upper 40's right now after being at 23% back in February. It has been a long recovery time and I have become very sedentary. Mostly because I HATE when I have an asthma like attack and can't catch my breath. However, my good friend invited me to an exercise opportunity...
  7. J

    Post CF bills

    We need to do this! A little boy's heart surgery bill goes viral about annual/lifetime caps! Anyone have CF bills they can share and pics doing treatments! http://www.cbsnews.com/news/boston-mom-hospital-bill-tweet-trends-amid-health-care-debate/?ftag=CNM-00-10aab6a&linkId=39169933 P.S. My...
  8. J

    Letter to senators regarding annual/lifetime caps-request input

    I have drafted this letter specifically regarding annual/lifetime caps on pre-existing conditions. I need to verify the costs of my hospital stays, but are there any changes I can make? I value your expedient input Thanks! I have Cystic Fibrosis, a pre-existing condition. Cystic Fibrosis is a...
  9. J

    What you want new nurses to know!

    Hi all, I am going to speak to a group of new nurses at Idaho State University about life with Cystic Fibrosis and things CFers would like them to know. What a rare opportunity! Please share all the things you would like these new nurses to know about CF patients before they become your nurse...
  10. J

    Transplant and sinusitis

    I have chronic sinusitis, have had numerous surgeries 20 years ago, which did not prevent infection. I have heard that sinusitis often causes acute rejection after transplant. Are there any newer procedures, sinus inhaled meds or other things I can do to try to get this under control before a...
  11. J

    Embolization for hemoptysis

    Is embolization only used for acute hemoptysis? Or can it be used for frequent recurring hemoptysis? I keep getting hemoptysis and it is not due to an infection. I am not taking any blood thinners at this time either. Has anyone Embolization or another method of treatment that reduced the...
  12. J

    Hemoptysis from exercise

    So I had a lung exacerbation in February and am feeling a lot better, so I decided to try walking on the treadmill. I only walked for 6 minutes, but then a little later started coughing up blood. Usually I only get hemoptysis if I use pain relievers that are blood thinners or during an...
  13. J

    Failed to qualify for vertex, try again?

    3 weeks ago, I tried to qualify for a Vertex study but my FEV1 was only 37% instead of the required 40%. Can I try again? Has anyone else failed to qualify and then got a second chance after IV treatment?
  14. J

    Postpone Transplant with Exercise?

    Has anyone been listed for transplant and then got off the list by exercising? Please share with me your story. I've lived a pretty sedentary life the last few years, but now that I have oxygen, I want to try exercising.
  15. J

    Feeding Tube Questions

    So, I just got a GJ tube placed 3 weeks ago, and the insertion site is really bothering. Part of the problem is that only one of the two buttons under the tube that stitched my stomach to my tummy have fallen off. It's been a week since the first one fell off, and I feel like there's a lot of...
  16. J

    Celebrex??

    So for about two and a half months, I have had this pain between my diaphragm and lung above my stomach. We thought constipation, but even after almost two weeks of not eating (I was really sick!), the pain was still there. Then, I thought moving hiatal hernia but was told that would show in...
  17. J

    Moving Temporarily for a Transplant

    I live days from the nearest transplant center, so obviously I will have to move for my transplant. My CF doctor advised that my whole family move with me since it could be a very long wait and/or recovery time. Has anyone moved your whole family and then moved back later? How do you deal with...
  18. J

    Considering Phoenix

    My FEV1 is hovering at about 31% and we were told to start picking out a transplant center. I am considering St. Joseph's in Phoenix. Has anyone gotten a transplant from there? If so, how is their communication with the CF team?
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