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Hi - I only just saw this post, sorry! I'm still waiting :) and my FEV1 has consistently been 20-22 for the last year. I was listed in April 2014 - I think it was like 20. I'm pretty sure my lowest ever was 18-19. Honestly at this low level it is all kind of the same, and they change even...

brad.johns - i can probably help as I had an issue with my zenpep and dosing and did a ton of research and asked a million questions and as best I could got to the bottom of it! but first of all - which zenpep are you on? what color are they (i'm on the blue - 25,000) not sure what other...

Wow, thank you all. I hadn't checked back on here in a while. I am glad everyone liked it. Steve - thanks for sharing your story - sounds like an incredible one and you seem like you have a really great attitude and spirit towards life. we used to have a stair climb at the hancock in boston...

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

thank you for the responses. i am going to see about getting a return and getting a heftier machine. since its brand new, and the medicine is getting delivered, and there are no noticable issues ....i am thinking it just isnt made for this kind of use like you say Gammaw. makes me mad, because...

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 daniela, congrats on having your tx!! i hope youre feeling great. i cant wait to be in your shoes :) wow , may i ask where you were transplanted? i am surprised that you are not able to go to campus over the summer to take classes. is your campus nearby? I hear so many different things from...

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...

Hi, Not sure if you found out a place for your son to get tx'd yet - i hope so! I am from Boston and have relocated to Pitt while I wait for my tx at UPMC. I know this thread is a month or so old, but let me know if you would like any information. Happy to help. Caitlin

i did not mean to put that little IV icon!! haha that is funny... i think i'd put the word IV in parentheses.

i just wanted to quickly reply about this. ive had cepacia for 15 years and though i am currently on the lung transplant list (i am 31 now) i was relatively stable and my decline was slow through that time. i did not experience "cepacia syndrome." One thing that MASSIVELY helped me and I wish...

thanks for everyone's input. we did seriously consider staying in pittsburgh. in fact, when i was transferred there from the brigham in february to finish my evaluation, we didn't know at that point if we'd even be returning to boston. we were essentially told by the team and my pulm there to...

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...

cftransplant - do you happen to know if you have cenocepacia (genomovar III) ?

Liza - thank you! I did think he meant a practice run haha. So cftransplant, I guess that is what you meant! Well most of the charters (almost all) have said that it is not a problem if that happens. That they will fly us back. I need to speak with the insurance companies though. I think at...

bookperson - of course i dont mind. i have cepacia (cenocepacia), and right now UPMC is the only center that will tx someone with that form of cepacia. it does seem odd to be leaving a great medical city of boston, but pitt is a great place! i am hopeful.

musclemania - i live in boston, so a car ambulance would not get me there in time. cftransplant - i actually did get transferred via schedule air ambulance from boston to pitt in march, to complete my eval. i spent about 8 days inpatient at UPMC. that was as close to a 'dry run' as we're going...

Liza thank you so much for responding. I see your tag also and my heart goes out to you today and everyday. I hope your daughter Rachel is doing well. The air ambulance is like the one you described - technically based out of state. They said they have other companies they call, and we have...