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  1. K

    do you have medicare and are on trikafta?

    In addition to the Assistance Fund, Vertex also has an co-pay assistance program for their CF modulator drugs called GPS.
  2. K

    Medtronic Supplies CFRD

    Hey Everyone. I switched to a different insulin pump and I have leftover Medtronic pump supplies. Here are some photos of what I have. I know insurance and deductibles and pre-approvals can be an absolute nightmare. Let me know if you are interested. Katie
  3. K

    Eyes Burning on Trikafta

    Cataracts are a side effect - but idk if those are symptoms of cataracts.
  4. K

    Pic line vs. Port from mstein

    I would definitely get a port. They are so convenient. I was getting about 2 PICCS/year and it was getting harder for them to place them. Plus if you go into the hospital you can start antibiotics right away and don't have to wait for the IV team. As far as it being placed on the inside of...
  5. K

    Drop in Fev1

    I cultured M.Abbssesus back in 2013/2014 and did 13 months of home IV antibiotics, oral and inhaled. Since then I have only grow it twice. Initially I was treated at UCSF and now I am at Mass General in Boston. Depends on your symptoms and the doctors involved. Most likely they will send you...
  6. K

    Infertility & Finding a Fertility Doctor

    I'm not sure what the cost would be for you because what I did was so different. I know an IUI is a couple hundred dollars bc my sister did one. But I'm only familiar with IVF. I also don't really know any specifics on doing it "naturally" as that wasn't an option for me.
  7. K

    Infertility & Finding a Fertility Doctor

    I have not used clomid. When I went for my consultation they found out immediately that I would not be able to conceive naturally so I went right to injectables for an egg retrieval. Instead of clomid, they do have trigger shots you can do, but usually that is when they will also do an IUI. I...
  8. K

    Infertility & Finding a Fertility Doctor

    Where are you located? The first thing I would do is talk to your CF doctor about it, they can give you a referral to the reproductive endocrinology department. If the doctor you end up seeing is not familiar with CF, be aware that some of the injectable medications cause constipation. Let me...
  9. K

    Laser Hair Removal??

    I am looking into having some laser hair removal done but my mom brought it to my attention that our skin in much saltier than the average persons and may result in burns from the laser. Has anyone has laser hair removal done, and if so, what was your experience like? Any adverse reactions...
  10. K

    GI advice

    From CT scans, I think. Also because I am female when I would go for my yearly OB exams and she physically checked me, they could feel them. Hope that helps - Katie
  11. K

    Non Tuberculosis mycobacteria

    Mom2Brett, I don't know if you do this or not but try having him do his albuterol before the treatment. Also, is he doing all his treatments at night or just amikacin? If not doing them all together might help open his chest (albuterol, hypersal, vest, amikacin, spiriva, and foradil are my...
  12. K

    Non Tuberculosis mycobacteria

    Good luck with your treatment :) I am on the same regimine - except I have inhaled amikacin not I.V. because I have diabetes and one of the possible side effects is renal damage. I have been told 12-18 months. Most likely 6 months to kill the bacteria, then an additional 6-12 months to make...
  13. K

    Non Tuberculosis mycobacteria

    if you have it try doing albuterol before your amikacin
  14. K

    GI advice

    I am 28 and I have had these problems my whole life. When I was a baby I could not pass my meconium illeus, but they thought I had hirschbrungs disease. Long story short I had several surgeries and a colostomy. When I was three they were able to reattach my intestines but it left me with a...
  15. K

    Using engineered probiotic bacteria for treating Pseudomonas-induced lung infection

    Both links here come up with a 404 - not found
  16. K

    Non Tuberculosis mycobacteria

    What I meant was that your genotypes play a role in the health of your lungs. I believe that different genotypes affect different aspects of CF differently. So therefore I think your genotypes do play a role is the whole aspect of things. But your right, not in the manner of amount of damage...
  17. K

    Non Tuberculosis mycobacteria

    Sure, it's a minilock safety infusion set 22G x 0.75in. (0.7mm x 19mm) Mine is made by BARD ref S02022-75 (those are zeroes) Thats pretty much all the info on the package, let me know if you have any trouble and I can take a picture of it and send it to you and maybe that would help.
  18. K

    chronic pain

    Most of my pain was in my teenage years and in my shoulders and hips, it was debilitating. I take colchicine now, and have for the past 10 years or so, and no longer have the pain. So I can't relate to the same kind of pain you are having but it sounds awful.
  19. K

    Non Tuberculosis mycobacteria

    If you want the cushioning for the port try a biopatch. It's just a foam disk and it will give you that extra cushion you want, plus it helps reduce the chance of infection.
  20. K

    Non Tuberculosis mycobacteria

    Out of curiosity, because I am fighting the same NTM, what meds are you on? You can private message me if you don't want your info on a thread.