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I'm sorry, I don't have anything to add here as I haven't had a lung or liver transplant. I really just wanted to say, WOW Steven, what an incredible story!!! So glad you are doing well! Autumn 34 w/CF

Hi Jeana, So sorry you are experiencing pain. I am having something similar right now that I initially thought was a pinched nerve or pulled muscle, but now I'm starting to think it's pleurisy. Anyway, I think often ER docs (or docs who aren't familiar with a patient) are conservative with...

Believing, Believe it or not, I have no idea where this ended up going! After all of that, I never heard another peep anywhere about the outcome of all of it. It said that their final action would be taken in October 2014, as to deciding if the changes would be adopted or not, but I can't...

Randford, What excellent points you bring up. I feel like I could be writing a lot of this myself. :) Thanks so much for raising these points, and trying to make a difference!! I completely agree that CFers shouldn't have to be almost on their deathbed in order to receive SSDI. By then it...

Hi there Love! This is a good question. I don't remember this being something that was ever addressed by clinic. I could be wrong though, it would have been *awhile* ago. ;) I really don't want to offend you, but want to give my opinion as an adult CFer regarding when to start the...

Yikes Ladybird, I hadn't read or seen anything about this yet. How scary for those of us currently receiving SSDI, and to those CFers who will need it in the future. Ugh, just ugh. Thanks for bringing this to my attention, and also please let me know if you start a petition, or find one...

Hi again Believing! Just wanted to say that I went to clinic in Omaha from birth until a few months ago. :) I'm sorry that Laura was of no help to you regarding the insurance issue. :( I wonder if a clinic SW in Kansas would know more regarding things specific to Kansas? Although not sure...

Hi sweetninis, I'm sorry you haven't been able to get a vest system for your daughter. You're right, all parents want (and deserve) access to the best treatments available to their children. There is a website here in the US that sell refurbished Vest Systems. I just checked it out and...

I think this is an excellent point regarding not allowing yourself to "go there". Sometimes we as CFers are fighting so many of our own demons that it's hard to hear about others. I sometimes have to take a "break" from this site because it gets a little depressing if you allow yourself to...

Believinginjesus, I was not offended, and I don't think apologies are necessary. While you say you typed it out of anger, you were simply stating an observation and how it made you feel. You didn't swear, or name call, etc. I hope this place is a place where people feel free to express their...

Aw! Thank you so much for your very kind comments!! I try, but often feel like it's not enough, so your comment was nice to hear. :)

Hi Liza! Do you by chance know Laura? Her user name on here is LAMP, but I don't think she comes around this site any more. She is from Omaha, but has lived in Arizona for several years. She moved from Tucson to Phoenix a couple years ago and now goes to clinic there, and her sister Geneva...

Hi believinginjesus, I second what jshet said. Not entirely sure how to respond, but I am also sorry that you or anyone else have felt unsupported. I have not noticed the pattern you are speaking of with many people posting in despair, and getting few or no responses. I will pay more...

A shining light indeed! And wow, 15,000 posts?! I shouldn't be surprised, I think in my early days on this site Melissa responded to almost every one of my posts. I remember how welcome here she made me feel. :) Really hard to believe she's been gone 5 years. Her spirit and memory live...

Hi Randomgirl, I'm afraid I don't have any ideas what that could be, but I really just wanted to tell you that it absolutely does NOT sound stupid, at all, to call your doctor about the symptoms you are having! There is nothing wrong with putting in a call, that's what they are there for. :)...

Yay! Thanks so much for your help!

Hi Ladybird, Thanks for all the great info you have shared! I hope you are able to get Kalydeco! Any chance you have all of the info you have gathered in some sort of file that could be emailed?? I'm going to clinic next week and would like to take another crack at getting it off label. I...

Wow Pat, I only have a second, but I wanted to say that I'm so sorry to hear what you have gone through. Sounds like a very rough and scary ordeal. I hope you are able to feel better and get stronger each day! Hang in there, Autumn

Hi nmw, I also got a little bump after deaccessing after a course of IVs. My was more like a small pimple, but still I think what you are describing. I think it's just granular tissue, and not an issue. I don't have my port anymore (it broke), but I do have several little dots (scars) over...

Hi Oboe, Sorry they gave your crappy (or no) instructions. Colistin is a real pain. I'm afraid I won't be of much help, because I have not done it for several years. Wanted to mention that it was always quite irritating to my lungs as well, and eventually I had a very nasty reaction to it...