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I have nothing to add except Ed you made me laugh with that story!!! Hahahaha!! Jenn 40 wCF

Yeah, and pace yourself. IV's are hard on me as well in the energy department. Rest as much as possible, for everyday tasks, I would prioritize and/or enlist the help of others whenever possible. I will put off doing dishes if I am exhausted, my rationale simply being that they will be there...

Ry, did you have part D insurance as well? I know Cayston is covered under that plan ( actually, it depends on the plan you choose for your Rx) , I was approved for it under my part D insurance, but not part B, but that was about a year ago. Also, for those who do not make much income, you can...

Amber, if you had a transplant while you had Medicare (did Medicare pay for it, either as a primary or secondary?), your anti rejection meds should be covered under part B. I agree, confusing, still learning something new all of the time regarding Medicare and I have been on it for nearly 8...

I am strictly Medicare part A and B, D as far as coverage goes with a medigap insurance... From what I understand, what is covered under part B is are albuterol, duonebs, pulmozyme, TOBI, and NAC (Mucomyst) and a few others, but not Cayston (as far as I know). Part B pays for 80% of the costs...

Praying for her and her family that it is a go...so young! :( Jenn 40 wCF

I just got my 3rd one placed this Friday, it's still a bit sore, but not like it was yesterday or Friday.. My other ports felt similar as far as pain levels went, by the end of the first week, the pain wasn't really noticeable unless I bumped it on something (it was tender in that respect for a...

I have been on several rounds of IV's this year too, with a couple bouts of sepsis thrown in....I really feel for you, all of you. It is very frustrating when you start to feel so crummy soon after IV's are done. I have found that if my course of IV's isn't long enough, I decline quicker so...

Been following this thread for some time now...I really pray that Lezly rallies soon, what a journey she has been through (and continues). Sending healing vibes to her and prayers all around Jenn 40 wCF

Awesome news!! What an amazing leap...Johnathan and Frank should be commended for their dedication to the CF community and for the lives that this app will potentially save. A big thumbs up to them! Jenn 40 wCF

Augmentin usually doesn't do the trick for the pseudo family, at least that is what has been my experience and what my docs tell me. Sounds like he needs a different antibiotic that will target his strain of pseudo better.. If they did a culture, the sensitivities should tell them what would...

Usually, it's admission time when home IV's won't do the trick for me or if I get high spikes in my temp, feel "toxic"..hard to describe, but I just feel lousy all over, more than usual and feel sick everywhere. Being that I have been septic a few times, docs get pretty aggressive with me.. IV's...

You are very good! Loved the song, you have a strong voice too.. Keep singing, no doubt you'll touch many hearts that way :) Jenn 40 wCF

When I applied, I was officially not working....my doctors had told me that I could not return back to work as an ICU RN, I literally went from working full shifts (and barely making it) to wearing O2 and being told that work was no longer an option.. I am not absolutely positive that you have...

A smidge below 30% and I'm 40 Jenn 40 wCF

Martha, thanks for that link! I didn't know that NY had such a program.. Something to look into for sure :) Jenn 40 wCF

I wonder if you qualify for extra help with your medical, especially prescriptions. If you don't make much in SSDI, then you may qualify for this help, check out Medicare.gov site, I think that there is some info about what you need to do to apply for this. I would also check in with social...

I am on Colistin, 75mg twice a day (when acutely ill, docs bump it up to 150 twice a day) and have been on it for years as well. TOBI just wasn't doing it's job, so we decided to switch....I think I'm doing better with Colistin. I grow out PA, resistant as well as other bugs (Steno, Staph, and...

Same thing here, I did my own flushes and also have Medicare which of course, does not cover the supply costs so I too go through an online company for my central line kits and hubers. Central line kits do need a RX as do the needles do, the company contacts my MD and then ships them to my home...

I think that the BEF foundation has scholarships for CF students through University of Pheonix, you should check the BEF site for info regarding scholarships. Jerry Cahill might be of help....he's a member here, but very active with BEF as well... Good luck! Jenn 40 wCF