Recent content by benthyr123

It will be life changing...I'm in this study. It's all good ??

Do you use an Advantage plan? I'm trying to figure out the best options

Does anyone have insight to changing plans? You seem to need a masters degree to navigate all the information. I have had original Medicare for at least 15 years...wondering how many of us use MedicareAdvantage , if any

Home IV therapy I'm really curious about this. I have always bitched to my doctor that 2 weeks in the hospital is putting me at more risk than home treatment. Since entering Medicare...I've had to stick it out in the hospital with triple the costs...that's government policy for you! My...

I can tolerate nebulized Tobi well...tried the Podhaler and ended up hospitalized because of bronchospasms. I haven't gone back to Tobi since. I do believe it is an individual thing since many people use it.

I don't think so...the Achromobacter I have has grown. I'm told I'll never get rid of it. I don't think I've ever cultured the other...I've never heard of the drugs you are using...interesting. I've always been given Tobi and Ceftaz....

I take this opportunity to educate people. The more people that know and understand what CF is, the better. I'll admit that I didn't always do this, but I'm 51 now so I can say what I want. I have never gotten pity from anyone....I feel I've gotten respect for explaining my circumstances and my...

I have also cultured this in March...seems to be growing, but resistant to everything known to man.

I would love to see a group for older CF patients....we have a great deal of experience to draw on.

If you can feed yourself you can use this. It's so easy and lightweight. I think it's actually ideal for kids...cool sounds and such. My vest is useless and this device is portable and small

I was in the Traffic/ Transport study. Basically took the real drug for 8 months when it became FDA approved I switched to "Orkambi" in July 2015. I started the trial with an FEV1 of 48%. I was hospitalized once and took Ceftaz and Tobi. I noticed an increase in headaches the first day I took...

Love this!

I'm headed down this road to a joint replacement. Has anyone on this site had one? There is NO information avail anywhere on this subject. I'm praying to get this done under a spinal, but I doubt that will happen. Thoughts? I'm 51, female, FEV1 45, DDF508, retired.

I'm facing this also...I see there were no replies. I CAN'T be the only one who is about to embark on this. Thoughts? I'm going to try to have this done with a spinal, but I'm doubtful they will agree to this.

I should have elaborated more...sorry. I'm 51, my baseline has been in the upper 40's for the last 7 years..even reaching 51% shortly after taking kalydeco (the first Vertex study) I'm not new to Vertex...I believe in them totally! I just don't think this combination is for me. I was in the...