Recent content by brutuscz

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    Covid19 vaccine and CF

    You will probably fell unwell for day or two but u will get through it. Having the vaccine will protect u that even if u got Covid u will survive it. Good luck and from someone whose been there you can do this. Remember being a cystic we have so many battles this will be ok!
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    Anxiety on Trikafta

    Good luck you will do amazing!!!!
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    Anxiety on Trikafta

    Bombard them with requests! I started 3 days ago. My fev1 is 30 percent I’m 63 years old and survived Covid! After the first day my dark green oatmeal mucus is yellow and white! I was coughing over 100x day, did 3-5 hours vest a day plus everything else and now I feel amazing??? I can’t believe...
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    Anxiety on Trikafta

    I like you found out in December I qualified for Trikafta!! I have 3 rare genes for Cf and have been told I’m the only one in the world with my genotypes.. for years I petitioned Vertex for help. I think I got lucky with them testing my genes because I constantly had myself and Cf team bombard th
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    Covid19 vaccine and CF

    Hi I’m 63 and got both shots of the moderna vaccine already. That’s because I’m a doctor. I researched everything and spoke to my CF team and was absolutely told to go for it so I did! First shot just sore arm and muscle ache. Second shot fever 101, aches body and head, felt like flu. For three...
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    When cf will no longer be an incurable disease??

    You must remember that many reasons that genetic mutations survive is because they also have a good component. The majority of cystics do not have heart disease. If you have your cholesterol checked cystics usually average around 100 not the norm of 200. Considering the amount of salt intake...
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    When cf will no longer be an incurable disease??

    Its not about the cure, its about learning to prevent excerbations. Its about knowing your body well enough to prevent further break down. Its about doing what you need to do and making yourself a priority. Yes CF sucks. Their are so many varying degrees of this illness, so many genotypes it...
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    What song do you relate your CF fight to

    I will Survive by Gloria Gaynor!
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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    CFers over 40

    I just turned 54. Fev1 63%. Diagnosed at age 24. I'm a doctor and my brother and I are the only two cf patients to have three genetic mutations of cf. I have had about 100 pancreatic episodes, but mostly respiratory. Mrsa, pseudomonas, staph. I love cayston, tobi and the acapella! My brother...
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