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  1. J

    Water on accessed port

    So, I went to take a shower. I put a plastic bag with tape over my accessed port. During my shower, it leaked and then my tagaderm got water in it. So, we took off everything, my husband wiped it all down with alcohol, we flushed it and removed the needle. When I told my doctor about it, he...
  2. J

    Blood in my port

    I am currently on iv antibiotics through my port. I had my second antibiotic running without the alarm on and I fell asleep. When I woke up like an hour later, my line had blood filling it from my needle all the way into the first part of my med tubing. I immediately flushed it with saline...
  3. J

    Sore nipple

    No, I am not breastfeeding, but my nipple on one side is very sore and it reminds me of when I was breastfeeding. Actually, both are tender, but one especially sore. Could it be from antibiotic use, like a yeast infection. Has anyone ever experienced this (not related to breastfeeding)? Or...
  4. J

    Changing port needle during iv

    My husband was trained to do the monthly flushes, but is there anything different when leaving the needle in? Besides leaving the needle in? Lol. The only real concern I have is holding the while thing in place and since my tubing has two sections--one for heparin and one for saline (like a y)...
  5. J

    Changing port needle during iv

    Im home on iv meds through my port. It's time for my weekly needle change and pro home iv can't do it. So my doctor sent orders for the hospital infusion center to do it, but they won't because he's not a local doctor. So he suggested I go to the ER!!? Hours sitting around in a germy...
  6. J

    Bloody noses

    Well, I am starting to have increased bloody noses, but I believe it is due to increased vitamin e, an anticoagulant. I was thinking that increased vitamin k would counteract that, since it's a natural coagulant. My question is how much is like a maximum dose of vitamin k per day? I already...
  7. J

    In the hospital
  8. J

    In the hospital

    This article seems to agree with my doctor! Arrg! Which is correct?
  9. J

    In the hospital

    So far this study seems to contradict what the doctor said:
  10. J

    In the hospital

    So, I was hoping to get my doctor to agree since I had a port now either not to admit me, or commit to a couple of days, but no such luck. His reasoning: I have resistant bugs, colistin can cause seizures and study shows patients who remain in the hospital see a higher increase in fev1. It...
  11. J

    Extremely scary PICC insertion

    It sounds like a panic attack. If one of your picc insertions was scary, that might cause you to continue to be fearful. Is it hard for them to get the piccs in? Lengthier times? Scarring? Picc getting coiled or stopped at some point? If that is the case, I woul definitely consider a port...
  12. J

    Hospitalization and port

    So, I'm thinking I'm going to be needing a hospitalization soon. My biggest dread is always how long my doctor is going to make me stay. He is not very flexible. But I'm wondering if that might be different now that I have a port. Will I even need to be hospitalized? Can they access it...
  13. J


    I successfully adopted my now 7-year-old son. He was two days old when we took him home from the hospital. It was a domestic adoption, but we flew out of state to get him. At the time, my fev1 was about 75% and I averaged one exacerbation a year. Basically my doctor had one small part to...
  14. J

    CF, marriage and depression

    Two things that have helped me--renewing my faith in God and having a really good friend (not my spouse) to confide in about some of the scary, discouraging, depressing parts of CF. Sometimes talking about it to your mate can be really emotionally draining, but you still need to be able to get...
  15. J

    Inhaled antibiotics

    Doe anyone take tobi and cayston (or other inhaled antibiotics) on 2 week cycles or 1 week cycles? I am wondering if this will hinder the effectiveness of the drugs? Tobi (although keeping my hospital stays down) is literally making me so miserable I am ready to throw in the towel. I have no...
  16. J

    Trouble with tobi

    I really need tobi, as it's the only thing during my off months with cayston that is keeping me out of the hospital. However, it makes me cough like crazy 24-7 and lose my voice. It is the reason I had such bad incontinence and had surgery 3 years ago. Anyway, I think the worst part is that it...
  17. J

    How do you volunteer for the VX809 phase III trial

    Honestly, my CF doctor is the one who has always recruited me for drug studies, but his wife is the drug study coordinator for our clinic. What does your Cf doctor/clinic say?
  18. J

    Cayston on vacation

    I guess I always vacation at family homes. I always boil the metal head.
  19. J

    Cayston on vacation

    Just boil it for 5 minutes like you do with pari Nebs.
  20. J

    What allergy medicenes do you take that helps?

    Great info, Saveferris. Anybody tried or have any info on how allergy shots affect CFers??