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  1. J

    Adult CF Center in Boston

    Hi st2019 so sorry for such a delayed reply here. I got to Mass General and have been very happy with my care there from Dr. Neuringer and Dr. Sicilian. Dr. S is part time now and I think he'll probably be retiring soon but he's great. I've heard great things about Boston Children's as well...
  2. J

    Waiting On A Sweat Test, Support...

    I'm glad to hear that the sweat tests results were negative! I know that doesn't resolve her symptoms, but I hope it gives you some peace.
  3. J

    Pari eFlow Aerosol Head Cleaner

    i haven't heard of this before! thanks for sharing it. I've heard of people using an ultrasonic jewelry cleaner to help unclog holder heads, but this new device is much cheaper. I try to at least rinse mine after each use and store it in alcohol between uses. let us know if you try it out!
  4. J

    What the Future Holds

    activity, activity, activity. I'm so sorry you're dealing with this diagnosis but catching it so early and at this stage in the drug development world your daughter was born in a good time. My parents always kept me active either through sports or activity at home (running as a family...
  5. J

    Healthy diet vs CF needs

    I've also been coming to this conclusion lately. maybe as a start you could add more cooked veggies into your meals in sneaky ways. for example: shredded/grated/chopped super fine carrots, zucchini, squash, spinach, etc. into burgers or meat loaf, muffins, stir fry, mix other veggie purees in...
  6. J

    New device, looking for feedback

    Hi tishen20, when i click the link it says "sorry, we couldn't find that page." can you fix the link and try posting again? Thanks!
  7. J

    Phase 3 study of VX-659 triple combination drug

    I'm currently in the other part of this study (VX17-445-102) and doing SO well. I am very, very hopeful these triple combos will be what we've been waiting for!
  8. J

    Experiences with Indrepta and TauriNAC

    I only took Indrepta B for about 1 month at the full dose and then had some hospitalizations and started a drug study so I stopped it. I do feel like it helped me cough up more junk and plan to restart it once the drug study is finished in January. I took Taurinac 3x per day (started at the same...
  9. J

    Low Ferritin and Iron Levels- is this common with CF?

    I've had low iron off an on for years. I was on iron supplements for years but stopped in highschool (I'm guessing my levels were fine then? don't totally remember). And then I had low iron again when I got pregnant, so took supplements throughout my pregnancy. no longer on them.
  10. J

    Been AWOL but need some 50 PSI Compressor advise

    edited: i totally didn't pay attention to the fact that you have the Invacare one and it's no longer made! oops! I have the Invacare Mobilair 50 psi compressor. I've had it for several years and love it. it's not really convenient for travel unless driving, but otherwise it's great! I've had...
  11. J

    w/ CF! - questions about CFRD and pregnancy

    Hi masterykonedy, i've known a number of women with cf that have had successful pregnancies with cfrd. there is a large group of cf women on facebook that are pregnant or hope to be at some point. it's a secret group so you wont be able to find it by searching but private message me here and I'd...
  12. J

    Portland, ME and Dartmouth, NH clinics?

    I'm so sorry i didn't respond sooner. I'm about an hour and 15 minutes to the clinic in Boston without traffic. If i have an appointment before 10am i usually add about 45 minutes to an hour to my drive. 2+ hours from Conway to MGH sounds about right but you'll have to factor in traffic as well...
  13. J

    Portland, ME and Dartmouth, NH clinics?

    I live in NH and am seen at Mass General in Boston. Generally Very happy with the care! Boston children's is a great cf center as well and they see adults there as well as children.
  14. J

    Unexplained Decline

    I would definitely get him checked for gerd.
  15. J

    Moving to Colorado- Between Denver and the Springs possibly-Short term rentals?

    i visited a friend in CO Springs a couple of years ago (her hubby was stationed there for the army) and had some difficulty with the altitude. I wasn't terribly sick or anything but we went for some walks and I couldn't keep my normal walking pace--i had to walk much slower just to breath. I had...
  16. J

    Coupons for Indrepta

    it's my understanding they only offer coupon codes if there was a lost shipment or something happened to your shipment during transit. They don't offer coupons normally. sorry for the bad news!
  17. J

    unknown genotype

    I grew up in chapel hill and went to UNC from age 4-27. Had amazing care there. They have a really large cf and lung disease research program with some big names so I would imagine that attracts doctors and fellows to the CF program (both adult and pediatric).
  18. J

    Two Years Ago

    Thanks so much for sharing your reflections Rubyrose! I'm so glad it's been beneficial for you! I'm one of the ones still waiting something that will help for my mutations but I wanted to say to you not to feel guilty. We're still back here walking slowly and continuing to move forward :) there...
  19. J

    CF and birds

    my mom is a vet and would never let us have birds. they can carry or get diseases that humans are able to contract from contact with the birds. I would talk to your doctor though and get their opinion.
  20. J


    Congrats on your new grandson! Here is a link to more information about the newborn screening. It's hard to wait for the appointment, but they will be able to tell you the results right away once the sweat test is completed. Its not a harmful or invasive test, although a squirmy baby might not...