Search results

  1. J

    Primary Care Dr

    Still trying to help Josh figure out what insurance to choose. For the adults, is your pulmonary doctor your primary care physician? If so, who treats your non- cf medical needs?
  2. J

    Mass Health help

    Josh will be 26 in a few weeks and will age out of my insurance. He is currently on MassHealth as a supplement, but he will have to choose a primary through MassHealth. Are there any MA residents who can give an opinion on options? Thanks!
  3. J

    Excess IV supplies!

    We have so many extra IV supplies. If anyone could use them, we'd be happy to send them out. The boys haven't touched them- most of them are in the bags from the home care company. Here's a list: 3 boxes of 100 non-latex gloves 102 10ml syringes saline flush exp. 12/15 18 5ml syringes...
  4. J

    Health journal book

    I have a new 3-ring binder style health journal if someone can use it. It was created by a CF mom to keep her daughter's appointments and medical records sorted. It has pre-printed sections for everything you can imagine. I...
  5. J

    patients are denied Kalydeco and sue

    Wall Street Journal
  6. J

    Jesse <3

    For those who haven't heard our sad news, our beloved younger son Jesse passed away on May 13th. He had been in the ICU at Boston Children's Hospital since April 11th where he was waiting for a double lung transplant. He had been listed since February 2014, but had a very rapid decline in...
  7. J

    Home oxygen concentrator- SO LOUD!

    Wow, Jesse just got a new 10L concentrator from our home care company and it is so loud! We had to put the beast in the living room so he could sleep! It is the Invicare Platinum 10. Does anyone have a quieter one that they can recommend?
  8. J

    Cleveland Clinic?

    We're still weighing our options between Duke and Cleveland Clinic. I know much more about the Duke program. The benefit if Cleveland is that we can stay home until the call comes. Have any of you been transplanted at Cleveland? I'd love to hear pros/cons. thanks
  9. J

    Appealing an SSI denial

    Josh applied for SSI and just received his letter saying they find him not disabled. Has anyone else written a successful appeal? How do you go about it?
  10. J

    Pulmozyme temperature

    I went to pick up Jesses prescription last night- two boxes of pulmozyme. The pharmacist came back and said she was really sorry but someone left it in the pick up bin instead of in the fridge. She told us she wanted to check if it was ok. Today she called to say the prescription was ready. When...
  11. J

    Aerobika- has anyone used this yet?

    Jesse is currently inpatient with pneumonia. His PT brought him this device to use. Has anyone else tried it? Http://
  12. J

    Science news-interesting possibilities!

    Did anyone else see this?
  13. J

    New spirometer in clinic

    Our clinic just got new a new device for spirometry. The old one had a small plastic mouthpiece attached to a rubber tube which was plugged into a laptop. The new one has a large, round (2" diameter) mouthpiece attached to a ridgid arm which is attached to the laptop- similar to a desk lamp...
  14. J

    Kangaroo Joey bags?

    Our supply company sent our regular order without the bags. I waited to see if they would come later, but after a week they're still not here. I called and was told the bags are on back order from the manufacturer with NO expected date yet. Has anyone else been told this? I can't believe they...
  15. J


    Jesse was hospitalized in May after feeling tired and having shortness of breath. His pfts were his lowest ever-33. After 2 weeks of aztreonam and ceftaz, he had no change. Switched meds to meropenem and colistin for two more weeks- still no change in pfts. His weight is up, sounds and feels...
  16. J

    Continuous Ceftazadime?

    Jesse was admitted today and is now on continuous ceftaz. Apparently it is more effective when there s a constant level. My question is, have any of you been on continuous ceftaz? Can you do it at home? Can it be delivered with an eclipse ball? Wondering about next week - Jess is done with...
  17. J

    Happy Mother's Day.

    I am blessed to be celebrating my 22 Mother's Day with both boys thriving and excelling! Josh turned 22 in April. He completed his senior year of college studying physics. This year his health has been stable ( so happy to report his weight is now 140!), and he's been able to work on a research...
  18. J

    Happy Mother's Day!

    Happy Mother's Day to all the other moms of CFers! It is a special challenge raising children with an illness. I am so grateful for the advice and support from so many others who are traveling the same journey. Thank you! Do something good for yourselves today!
  19. J

    Source CF Softgels

    We buy Source CF Softgels vitamins for the boys online from the website For some reason, the site is down and I have no way to re-order by phone. Does any one have any info?
  20. J

    Merry Christmas!

    Merry Christmas and a healthy New Year to all the families of!