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hi all, wanted to share a blog i wrote for the CF Lifestyle Foundation. Hope you like it and comments welcome. :) http://www.cflf.org/blog/unthinkable-transplant Caitlin

Hi all I recently bought a new compressor, and the tubing gets SO HOT pretty soon after i begin. I am doing a treatment of inhaled ceftaz that usually lasts about 20 mins. Originally I thought it was the tubing they sent so i switched to another kind they had, but that was the same. It makes...

HI, anyone on forteo? anyone taken it in the past? what was your experience? searched through old threads and no one has talked about it since 2012 on here, so thought I'd ask. I am being strongly encouraged to start it, but am hesitant because of side effects, and would love to hear from...

Has anyone here done the 23andMe DNA testing? I did it and I am so curious if there are any similarities/links between other things in our DNA. For example, I have a trait that a minority of the population has that makes me resistant to the most common strain of the norovirus. It was...

Hi all, I am trying to spend my time pre-tx letting myself think about all that I would like to do post-transplant. And one of those things is travel. I'd love to hear stories about how you all have dealt with food safety while traveling, particularly in europe or out of the states anywhere...

I am currently listed for transplant and although no on is pushing me to get a g-tube. i know they'd be more than happy to put one in. day to day is a struggle. my lung function is at around 20%. i have been on IV's nonstop pretty much since december. I had gotten down low to like 94 but was...

hi, I am currently listed for transplant. 30 years old. have a PICC currently in my left brachial, its been there since february 13. I have had dozens of PICCS, probably close to 50, since I was a young teenager. lately my cf center (boston children's) is more paranoid than ever about clots...

Hi, I am currently about to be listed for tx at UPMC but I live in Boston. I have almost finished my evaluation and expect to be active on the list within a week or so. We have set up air ambulance with Angel MedFlight but we have to have "backups" in the unlikely case that they can't get...

hi I've been on 2L of o2 at night for years now, but recently had a really bad fall and winter and have been sick with colds a couple times and have been on full time oxygen while i'm recovering. obviously its not fun. i have a portable machine, top of the line, that i own for when i go on...

Hi, I know often inpatient we get IV saline on a drip, but do any of you do IV saline drip at home while you are on IV antibiotics? This time around I seem to be incredibly dehydrated and the only thing that makes me able to clear, and to feel better is, IV hydration. No matter how much water...

Hello, I am going through an exacerbation right now and on IV antibiotics and have been having something unusual happen. I feel really lightheaded when I lie down, and my BP drops to like 79/45 !! I normally run very low but this is too low, obviously. Two nights I woke up almost fainting --...

Anyone on Wellbutrin? Am just starting my research and have yet to ask my dr. Haven't found much online other than a few random things talking about CFRD. Curious to hear other people's experiences, if any. thnx

Hi. I started Kalydeco last year, and although my lung function is terrible (was to start), I have experienced a sort of reprieve, that has allowed me to stave off transplant a bit longer. I am no longer as short of breath, and can tolerate travel much better. I want to do whatever I can. I...