Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Search results

  1. L

    CF and Sleep Meds

    Cyril, my daughters noticed the same thing. Take the pill and nothing, they take the liquid and it works better than the pill but give them the IV version in the hospital and it knocks them out.
  2. L

    CF and Sleep Meds

    Everyone's given the same suggestions that I would have with the one exception, asking for the sublingual version of Ambien (Edluar). It gets into the bloodstream quicker and as of 2011 was not available in a generic form. Zzzquil is Diphenhydramine (aka Benadryl), which someone else mentioned...
  3. L

    Starting treatment for MAC: few questions

    My daughter was on Ethambutol and Myambutol for MAC. No ill side effects to speak of. She started in late December '09, in April '10 she was clean but because she was on immunosuppressants and relisted for her second tx, her new tx clinic wanted to keep her on them until her tx. She was required...
  4. L

    Breathing Treatments Bad for Parents/Caregivers?

    Just my two cents as a mom to two for the last 23 yrs. We've never had any doc tell us that we should not be in the room when our daughter's nebulized their antibiotics. We have had a nurse or two, while in hospital wear a mask because they were pregnant, while TOBI was being nebulized. We have...
  5. L

    Traveling with Cayston and Disinfecting

    We wash the Altera with the hot soapy water. Then I sterilize by putting 2 cups of water in the microwave to boil, depending on microwave , it takes about 2.5-3 min. to get 2 C. of water to boil. I then put the Altera parts in the boiled water for about 3 min., drain, and put to dry on a paper...
  6. L

    Speak Out for Sarah Murnaghan

    The CFF's focus is on a cure and treatment and keep out of transplant topics. Here is a excerpt from a blog discussing a meeting with Dr. Beall from the CFF.
  7. L

    getting motivated to eat

    I just want to say, I understand. People (non- CF) tend to think "oh how easy! Just eat!" I'm not saying you think that though! Eating for some CF'ers becomes such a chore that it's no longer enjoyable. They know they need to eat but it's hard. I'm not trying to make excuses, just trying to...
  8. L

    Help- Going to Italy. Pari TREK? other traveling advice

    Hi, We too travel quite a bit and I also recommend the Pari Trek. We purchased it when it first came out and discovered we didn't really use/need the battery pak, so when we purchased a new one two years ago we only got it with the wall charger and the car plug. You can use it with Pulmozyme...
  9. L

    Specific Carbohydrate diet

    I'd love to hear more about this diet.
  10. L

    Cayston- new Altera handset every cycle?

    We date each new set that comes in. My daughter uses three of them for each months cycle so that she only has to sterilize once a day. She rinses/washes them out and sets them on the drying rack then in the evening before bed sets them in the sterilizer and turns it on. On month 4, she disposes...
  11. L

    Help! Sterilizing

    Just don't use the Medela Quick Clean Micro-Steam bags or dishwasher to sterilize the Altera (Cayston) nebulizer.
  12. L

    Very Discouraged and Need Some Guidence

    Annie, first I want to say, I tried Zumba on the Wii, I couldn't keep up with the tutorial! Now, I want to say that I hear what you are saying and I know where you're coming from. Not because I've been in your shoes but because I was there every step of the way when my daughter went through it...
  13. L

    New Lungs

    Super congratulations on receiving your wonderful gift!
  14. L

    Over night camp - how

    This will be a wonderful chance for your daughter to bond with her fellow bandmates! It's good that you're getting a head start on what you need to do so your daughter has a fun and "normal" camp experience. My two girls went to Girl Scout camp, one with me there as a camp counselor for another...
  15. L

    New eRapid - LOVE IT

    Tried the link, it can't be found.
  16. L

    New eRapid - LOVE IT

    Thanks! I went to the CFF pharmacy site to take a look at it and then sent them an e-mail. That was two days ago, I haven't heard from them yet. I can't recall if I mentioned that we're already familiar with the ebase, my daughter uses Cayston. I do know the differences in the eflow (for...
  17. L

    Where/how are post transplant patients treated?

    Oh! If you don't get enough replies, try reposting this in the transplant section too.
  18. L

    Where/how are post transplant patients treated?

    As Amber said, every center does things differently. At Stanford, you followup with the tx team post tx and don't go back to the CF clinic, at least for adults. Everything from tx forward has to be cross checked with your tx team. Every single medication you take, OTC & prescription. You will...
  19. L

    New eRapid - LOVE IT

    Wow, you're the first person I've heard that'd gotten their hands on one. I didn't think they were available yet! Good to know. Did you're insurance cover it? Also, do you know if the other meds, albuterol or pulmozyme have to be altered or if they're the same vials and amount, you use in a...
  20. L

    Tricare insurance supplements

    That info. would be interesting to know! I did not know they had a free antibiotic program! Will you post when you find out about it?
Top