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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...

I am on Kalydeco- have been since july 2011. I am about to be listed for tx at Pitt. I was almost there 3 years ago but Kalydeco gave me a slight reprieve. I was able to feel better for about a year and a half and saw a 5% increase in pfts. My lung function was already 28% though mind you, and...

Wow, i didn't realize i had posted this two years ago and never looked at it again. It was an up and down time, and I was really fighting at the time to try to get tx in boston. here i am 1.5 years later and am about to be listed at upmc. went there again in march to finish my evaluation...

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 --...

Ha wow thanks. Ed, sorry to hear it didn't work! I guess you just never know. Thanks Jamest - are you on a lot of other meds? No side effects?

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

Thanks again for the replies! Yes, I know Africa has some great health care also. I have definitely thought of South Africa. My issues anywhere are health care availability, elevation (i notice a difference at even 1,000 feet), and general cleanliness/prevalence of disease. My fev1 is only...

Thank you everyone who responded so far! Sue - where in Africa did you go? So curious. Yes, I have heard and what I know about BA is that its the Paris of south america, so to speak. My health definitely isn't great. I need o2 to sleep (i have a tiny portable concentrator ... expensive but...

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...

ps one of the main reasons i have stayed anemic so long is because of this very issue: iron binding to the bacteria. i have b. cepacia which they theorize is even more "iron hungry", and we dont want to aggravate b. cepacia. all study literature seems to point to it helping pseud., but i wonder...

this is interesting. surprised ive never heard of it before. lets keep this thread going -- anyone else participate in these studies? i see numerous small ones have been done, like someone said above. no mention of it on cff.org