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  1. MissAlexsBP

    San Antonio Adult CF Clinic

    HI Jim! Thanks so much! It's always nice to have options and that the Austin clinic is good and always improving. We currently drive 4.5 hours to my clinic, so 1.5 would be a welcome reprieve!
  2. MissAlexsBP

    San Antonio Adult CF Clinic

    Hello! I was wondering if anyone had experience and what they were with the San Antonio, TX adult CF clinic. My husband and I are considering moving, but before we do, want to hear about the clinic! Thanks!
  3. MissAlexsBP

    CFF Article about the First Global Study of COVID-19 in Children With Cystic Fibrosis Reports Reassuring Outcomes :) Stay safe, everyone!
  4. MissAlexsBP

    Scottish government and Vertex reach agreement for Kaftrio

    Some exciting news! Scottish government and vertex reach agreement on Kaftrio! :)
  5. MissAlexsBP

    Inhaled Tobi vs. Tobramycin

    Hi everyone! My insurance recently made me switch from Tobi brand Tobramycin to generic Tobramycin (both inhaled). During the last few Tobramycin months (cycled with Cayston) I have started to feel achy and have a drier, more persistent cough than I remember while being on Tobi brand. I am...
  6. MissAlexsBP

    Liver Enzymes and CFTR Modulators?

    Thanks @kenna2!
  7. MissAlexsBP

    Liver Enzymes and CFTR Modulators?

    Thanks @Ratatosk!
  8. MissAlexsBP

    Liver Enzymes and CFTR Modulators?

    Hello! I am a moderator on the Facebook page and posting on behalf of one of the members of our community. Our member writes: "My son is 26 and started #Trikafta earlier this year. His pft’s went from upper 70’s to 98%. Now 2 weeks later his dr told him to stop immediately...
  9. MissAlexsBP

    Would you Recommend the Vest?

    Hello! Sorry for the delayed response! I have a Hill-Room vest model 105 and love it! Initially when I was younger (I'm in my 30's now) I was not super compliant with it because it was 'just one more thing to do', but as I got older and my doctors encouraged me to give it a try I started to...
  10. MissAlexsBP

    Weight Gain

    Hi! Are you on any appetite stimulants and/or receptive to taking them. It's a bummer to take another medication, but appetite stimulants have helped me a lot. Originally I was put on Megace, which made me an eating machine and I quickly gained 10 lbs. I was taken off Megace because it is...
  11. MissAlexsBP

    Portland, ME and Dartmouth, NH clinics?

    Hi Lisa! Happy New Year to you too! I was born in Boston, MA and lived in NH until I was 22ish. I did not go to the Portland or Darthmouth clinics, but I was seen at Boston Children's Hospital (pediatric into adult) and then had a smooth transition to adult care a Brigham and Women's in...
  12. MissAlexsBP

    Got new lungs

  13. MissAlexsBP

    When did you decide to stop going to work?

    @LunaFaith Thank you for your reply! I am definitely going to bring it up with my clinic :)
  14. MissAlexsBP

    When did you decide to stop going to work?

    @Kenna2 Thank you for your response! I feel like since I'm still relatively 'healthy' I should keep working, but your comment about not waiting until my PFTs really start to fall is what I am afraid of doing to myself. As silly as it sounds, thank you for the confirmation that I don't need to...
  15. MissAlexsBP

    When did you decide to stop going to work?

    Hi all! When did you make the decision to stop working? I am currently 29 years old and my PFTs are in the 60's and during good appts mid-70's. Currently I work around 20 hours (retail), however, that still leaves me tired and I'm finding it hard to manage keeping up with all of my nebs...
  16. MissAlexsBP

    Medical mystery: Collection of weird symptoms

    We reposted this on our social media accounts and a couple people responded: "I don’t have cf son does but I can tell you I took Levaquin once and will never again . I was sick as a dog on that had to stop after three days . My wrists and ankles hurt so bad and dizzy also. Pharmacist said it...
  17. MissAlexsBP

    $25/$40 Gift Certificates..Pulmozyme Survey still needs MORE participants all groups!

    Hi all! Update: There are still some opportunities for people to complete a market research study for Pulmozyme. There is still an opening for a teenager (ages 14-17) and 9 care givers of patients who have never taken Pulmozyme. Thank you!
  18. MissAlexsBP

    Newly Cultured NTM/MAC

    Hello, When we shared your post, @CFWarrior86, on our social media account, one of our members writes " My daughter grew Nontuberculous mycobacteria (NTM) when she was about 10 years old and had to be on a strict regimen of inhaled antibiotic (cayston) for over a year and had to be tested for...
  19. MissAlexsBP

    Cord Blood

    Hello, When we shared your post on social media @emudge3, some of our members replied "My daughter had the cord blood saved for her daughter who was diagnosed with CF while she was still pregnant. I know that it's an expensive procedure but my daughter & her husband felt that it was an...
  20. MissAlexsBP

    CF and birds

    One of our Facebook members writes: "Birds are a non-negotiable NO from my son's doctor. They carry bacteria in their droppings that can easily be blown into the air with feather ruffling and flapping. It is devastating to me because I've had birds all my life!"