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It sounds like you have an awesome sister-in-law!

Sure wish you'd been able to get her name or see her name tag. I would have requested of the corporate office that you wished to receive a formal apology from the manager of that particular location with assurances that the hairdresser in question would receive proper training on how to handle a...

Have you considered a G5 by Vibracare? http://www.g5.com/products/vibracare/ This is what my daughter uses most often. She also has a Frequencer but since decline in pft's she doesn't feel like it goes hard enough for her.

We use the small bag that comes with your typical luggage set. Most people probably use it as a bathroom bag, because it's big enough to hold a hair dryer, curling iron, toiletries etc. Anyway... it's big enough to hold a Pari Pro Neb machine, nebulizers, hand held percussor (my daughter uses a...

Thanks! I read her bio and I see she's been there for all of her career. Which, when I mentioned to my daughter's current CF doc, being surprised that some of her old docs were still at the hospitals she had visited as a young child, she told me that they tend to stay put.... pretty much for...

Hannah, you are so very welcome! I'm glad to hear that your appointment went better than expected. That's always good to hear. I hope the oral treatment they gave you helps and you can stay out of the hospital. It's hard to cram in those extra treatments but try and get them in as best you can...

Quick question here, Those of you who see Dr. Bonnie Ramsey, has she always been there or was she once at Duke? Her name is so very familiar. Now to the question at hand. We are a retired military family and have been to many CF clinics over the years, all accredited centers for the CFF and...

Hi Hannah, I was looking at Tricare Reserve select and this is what I came across. I hope the site will allow this link to stay up. PM me if it's not here. It should be covered for you, provided you get the prior authorization...

Yes they do. Hannah, are you a retired dependent or A/D dependent? Either way, they are covered, but home health care is not. So all blood draws for levels will have to be done at the lab and if you have a port and need your needle changed and don't do it yourself, you'll have to go in to get it...

My daughter's been getting her flu shot for 24 yrs (since she was 4 months old) and I for 22 (big giant chicken that I am) and have not gotten sick or come down with the flu, ever (knock on wood).

Perhaps there is a transplant support group with other CF patients that may need or be able to use your unopened meds? Also, Bill's suggestion is an excellent one. You could also let the nurse know of your excess meds and if she knows of someone that could benefit from them, grant her permission...

FYI, You CAN NOT use the Medela steam sterilizer bags for the cayston nebulizer head. (the metal piece) Kinda makes sense but wanted to put it out there.

It's caused by air trappage (probably my own made up word). Many will also have rounded shoulders which is caused by all the coughing and often times will accentuate the barrel chestedness. My oldest daughter, Anna', had a barrel chest with slightly rounded shoulders. There really isn't much you...

Sad to say, I'm hearing this from all over. I'm no help, sorry. I hope you can qualify for those talked about subsidies. Sue3582, yes, there will be penalties.

Good thought cheerfulpuppies! I completely forgot to say that when my daughter's took the OTC vitamins, they were instructed to take enzymes with them because they were not specially formulated for absorption like the CF vitamins are.

I did not know that ADEK made a gel. But other than that, there really isn't any other solution but adding individual vitamins. Depending on what her levels are, her dietitian should be able to work with you on that. Before Source CF came on the market, my girls refused to take the ADEK's after...

One thing to keep in mind is that CFrD is treated differently than non CF related diabetes. You will want to ask your clinic for a recommendation for a endocrinologist that is familiar with treating CF related diabetes. We had difficulty finding one that was in our network and finally had to...

Hi Ashland, My daughters both were diagnosed with CFrD. My youngest was on again, off again CFrD for about 4 yrs before she finally stayed CFrD. Sounds weird, I know, but seems it wasn't too unusual for it to happen. They both used the Freestyle Lite. They especially liked that one, because it...

We bring along a plastic bowl with a top and a cup that is microwaveable. After washing the parts with hot soapy water and rising, I will boil a cup of water in the microwave. I then pour the water into the bowl with the lid and put in the mesh piece, cover and swirl. I leave it in for 5 or so...

Wow, I'm so sorry you're having so much trouble with CFF services pharmacy. We've only ever had one delay in delivery and it was UPS's fault. When Novartis changed over to their new pharmacy system with TOBI, we waited and waited and finally asked the clinic why they couldn't just send the...