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Type: Posts; User: Jeana Lynn

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    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.
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    kenna2 with all the different junk you were...

    kenna2 with all the different junk you were coughing up, what was your starting fev1? In a way, I am a little terrified of all the coughing from the "purge" because with my coughing fits I get SOB...
  3. Thread: Speed Bump

    by Jeana Lynn
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    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...
  4. Yay! Now I just have to get the paperwork from my...

    Yay! Now I just have to get the paperwork from my clinic. I'm at 30% lung function and I'm always sick, but I'm hoping Trikafta will help me become more stable.
  5. 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?
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    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,...
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    I, too, am curious about your ages. My husband...

    I, too, am curious about your ages. My husband and I have been together for about 23 years. We are at way different places now at 41 and 42 than we were at 18 and 19. Honestly, my husband had a...
  8. 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...
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    I think I will find out when they shock the pool...

    I think I will find out when they shock the pool to be "safer." Also, the lazy river walk is in the morning before the pool opens to the public, so hopefully less bacteria then. I was on the swim...
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    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...
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    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!...
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    Thank you Rebjane! Yesterday I sent my letter in...

    Thank you Rebjane! Yesterday I sent my letter in to our state newspaper and I hope they publish it. I have already contacted my senators and called relatives and friends to ask them to contact...
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    I have heard that if you contact senators out of...

    I have heard that if you contact senators out of state, the email is disregarded and doesn't reach them. Is this true?
  14. Jricci, I have heard that if you contact...

    Jricci,
    I have heard that if you contact senators out of state, the email is disregarded and doesn't reach them. Is this true?
  15. Should I even put the part about working and...

    Should I even put the part about working and retiring? I was trying to personalize a little and show that I had worked as most cfers do until they no longer can, but maybe I should leave that part...
  16. 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...
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    So here is a letter I drafted to email to...

    So here is a letter I drafted to email to representatives in reference to the caps. The only thing I am trying to verify is the cost of a hospital stay (that insurance covers, not my cost). I found...
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    Well, I gave the speech and the new nurses were...

    Well, I gave the speech and the new nurses were very interested in what CFers had to say. I shared the ideas that you told me here and I was asked to come speak again to another group! Thanks for...
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    Where did you find the info about the caps not...

    Where did you find the info about the caps not being reinstated for pre existing conditions? Could you provide a link? Thanks!!

    According to this article that I found, caps could be reinstated by...
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    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...
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    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...
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    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...
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    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. ...
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    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...
  25. Thread: Celebrex??

    by Jeana Lynn
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    Thank you for your thorough answer LittleLab. The...

    Thank you for your thorough answer LittleLab. The reason I wanted to try Celebrex is because it is supposed to be a non blood thinner unlike other NSAIDS. As I write this though the pain is...
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