Recent content by Oboe

There's a lot of people that just don't tolerate nebulized colistin. It irritated my lungs so harshly when I took it. Had more than one bout of hemoptysis from it, too. Think I lasted a total of five days on it.

What's very common is for CF lungs to be colonized with various bacteria, most commonly pseudomonas. I know my lungs have two different strands of PA and MRSA may or may not be in there. So if you only transplant one, the other one's still colonized and will just infect the other one. Plus...

If I remember correctly, the formula for benefit reduction with SSI is they ignore the first $20 of a given month, then subtract 65 from your total earnings, then divide what's left by 2 then subtract that from your monthly SSI. I think I did the math once on making $200/month on some...

Here's a similar thread from a few months back. My post in it is still pretty relevant. If you have any questions feel free to ask. http://forum.cysticfibrosis.com/threads/128471-Cystic-Fibrosis-and-Florida-Live-in-Florida-Please-Reply!

Strength/weight training, if you can, helps too. Put that protein to good use. Not only does it help build muscle, but you'll have more energy, and get some of that junk out of your lungs.

I take fluticasone for probably similar inflammation to Ratatosk's kid. It's a generic flonase and works well enough. I don't pay out of pocket but according to google it costs like $11-20 at the stores it lists (walmart, walgreens, kroger, etc.) I don't know if it'll help with polyps, though.

I'm on it. It's just like any other enzyme, really. Nothing special. I was on Creon before, when I'm in the hospital they give me Zenpep. I honestly don't see any difference in the three.

That's where I go. It's pretty good, if you don't mind me adding my two cents. It seems like it's been in a bit of a transition this year, though. Our CF coordinator left in January and they have a woman covering what she did, but I'm not sure if she's actually the CF coordinator now or if...

Shands at UF in Gainesville's probably the best in the region. I was with them from when I was 4 to when I turned 21. I never got enrolled in their adult program for mostly personal reasons. I go to the one in Jacksonville now, and it's small but pretty good. One of the best RNs and CF...

Cool, thanks. Yeah, that's a little more than I can afford. The medicaid isn't so bad, almost everything I need is covered without issue, but I've been butting heads with them for a few months over a bunch of things. Orkambi, okay, it's new and expensive I can understand that. They also...

Sheer curiosity, what are you paying for a plan like that? I'm on Florida medicaid and honestly don't think I could afford anything more, but I'm just curious about it. I tried looking costs and stuff up on the marketplace myself a while back and it wouldn't let me make an account because I...

I'm at 25%ish and I spend most of the day on the computer. Internet, video games, whatever. Read sometimes. I'm still well enough that I don't need oxygen all the time, but I do when I do anything more strenuous. I still work out every few days, but I need my oxygen for that. I lift weights...

If by Obamacare you mean medicaid, then it really varies from state to state. Look up your local programs and whatnot.

Still haven't gotten mine. My FEV's too low, ~24-25%, and Florida medicaid doesn't want to cover it. I think my docs are working with Vertex about efficacy data and contraindications about it for medicaid, but I don't expect anything. Though with all the trouble people with low function are...

Plain ol' office chair from Staples. I sit in this thing for most of my day. Have had it for about 6-7 years now.