Search results

LOVE this! So glad you feel good enough to do something you enjoy! It sounds so fun! Do you ever do any snowmobiling?

Hey Red, My doc has basically said that he finds culture results/sensitivities to be useless. He says that in a petri dish it might show someone is resistant, but when given to them in real life, it works. Also, sometimes it shows someone is resistant to several antibiotics, but when used...

Hey Pat, I have a friend (pre-transplant) that recently switched from Tucson to St. Joe's and she loves it!! Her sister had her transplant at St. Joe's and they really liked the cf and transplant teams, which is what motivated my friend to make the switch. So I'm optimistic you will be happy...

Hi Lisa, I'm sorry, I don't have any advice as I've never cultured MRSA. And I'm sorry about the drop in PFTs and generally feeling of yuckiness. I really just wanted to say "hello" and welcome you to the site! I hope you get some replies.... Take Care and see you around :) Autumn 32 w/cf

How cool that it was you on the Today Show Martha! I had heard about the segment but have not seen it. I will have to watch it now for sure! You and I have spoken (via email)before, and you helped me make my case to my doc for prescribing Kalydeco based on my having the residual function...

Congrats! Very exciting! Thanks for sharing, and the pic is great! Take Care, Autumn

@ Ry, I would have to agree with you, and was thinking the same thing. They are saying, however, that it was "primary graft failure" and had nothing to do with adult lungs being transplanted into a pediatric patient......... Overall, I still think breathinsteven summed up this issue so well.

I just read last night that Sarah's first transplant failed within 24 hours and she was immediately back on the transplant list. She received a second double lung transplant 3 days later. I can't help but wonder why this was not reported until now, when everything else about her case was so...

Hi Kat, Are you currently trying to conceive? I'm just curious as to why/how you know when you ovulated? I know at 19 I had absolutely no clue when I ovulated. ;) It was only later after we started trying to conceive that I started charting, tracking my symptoms and basal body temperature...

Bharison posted the following in another thread regarding meds causing hoarseness. I know you are not saying your daughter's voice loss is a result of Tobi/Cayston but it may be worth a try: I have had hoarseness with both Tobi and Cayston. I was advised by a pharmacist to gargle with Liquid...

Very interesting bharison, thank for sharing! I don't do Tobi at all anymore or I'd try that. I definitely sounds worth a try! Autumn 32 w/cf

I used to have to write notes to my teachers/professor's telling them that I could not speak so please do not call on me in class. Ugh. Trying to talk took so much effort (and nothing was really coming out) it became exhausting so eventually I'd have to give up and full-on whisper. So I can...

You're very welcome! I'd also love to hear from anyone else who has tried it.

Hi Red, I experienced ridiculous hoarseness with Tobi, to the point where I could only speak in a faint whisper for days/ a week. I've never experienced any hoarseness with Cayston. Love the stuff! Take care and good luck, Autumn 32 w/CF

Thanks GenH for keeping us up to speed! Very exciting stuff indeed! I'm wondering how this will all play out for those of us with DF508 and a residual function mutation. It is looking likely that these drugs will be approved for homozygous Df508s before the residual function group...

Hi Cyril, My docs usually give me at least one bag of fluids at the start of IV antibiotics. Sometimes they've kept me on fluids for a few days. I've never noticed an immediate difference, but that doesn't mean it's not doing anything. I have recently heard of another CFer trying "hydration...

I just want to say that I'm so sorry for what you are going through! I'm the one with CF in my family, but I often think of what it might be like if my daughter had it, and I honestly can't even imagine. I think it is MORE THAN OK for you to vent your honest feelings, and to feel sorry for...

Melissa! This scenario is SOO familiar to me! The sweating, the clenching, the yelling at the cars in front of me to GOOO so I can get to a toilet! ;) So sorry you got into a car accident! Ugh. Glad the adrenaline made it subside until you got home, and so glad no one was hurt! And I'm sure...

GAH! Pat! I'm sorry! This story sucks, but I gotta say how awesome it is that your mom is still there advocating tooth and nail for you!!? SOOO glad you got the lift to Tucson. ER docs, in my opinion, are FRIGHTENING. 95% of the time they know nothing about CF and don't seem to care that...

Hi fcalbano, ChrisDopher's comments were not directed toward you, but rather Albino15, who posted twice in this thread before your post. I believe he was addressing her comments regarding Obamacare/Sebilius/the CFF. I think your point is a very rational one, that no one would consider flaming...