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Good question Leah, I'm curious about this as well. I can not tolerate Tobi (bronchospasms), and had a terrible allergic reaction to Colistin a few years ago. That leaves Cayston as the only inhaled antibiotic in my "arsenal", which is scary. I know a guy who has nebbed gentamycin for pseudo...

Hi Semnle, I'm sorry that you are confronted with this situation/decision. This disease causes so many problems in addition to the physical. Ugh. Firstly, I want to say that I think there have been SO many excellent responses here, and I agree with the collective sentiments that it's a bad...

Hey Neil, me again. :) I dug up a business card I have from Monaghan (the company that makes/distributes aerobika) with name and contact info of a representative. I'm sending you that info in a PM. Hoping you have luck contacting them that way. Autumn

Hi! I'm so glad to hear you like it and the hoses aren't popping off! Can I ask what nebulizer compressor you are using it with? Also are you using it with the normal saline, or Hyper-Sal? My respiratory therapist thought the stickiness of the Hyper-sal might be causing my problems. And the...

PS. Also, ask your clinic about this (if you haven't). Some clinics here in the US have been giving samples to patients. Worth asking I suppose? :)

Hi Neil! I have tried it. I used it with my Mobilaire compressor because it says it needs a higher PSI than most neb compressors put out. For me, the hoses kept popping off constantly with the Aerobika, so I gave up. I didn't give it a good enough chance to see if I really noticed a...

I'd just like to second this! :) There are quite a few of us moms on here if you need us or just want to chat. :) I used to be a member of a facebook group called "Parents with CF", but after I read your post I went to my FB page to find the group so that I could be sure of the name of it...

Thanks Love! I just hate reading anything like that because while I'm SO excited about all that's going on, I can't shake the thought that we could still all have the rug swept out from under us at some point. Maybe I am a pessimist at heart? I did some searching and found the main post I...

Hi all! I have recently read a few somewhat concerning things on social media regarding Kalydeco, that I had not previously heard anything about. Instead of spending hours googling trying to glean info, I thought I'd ask y'all (I say y'all now) on here because we have so many super...

Whoo hoo!!!!

Thanks SO much for sharing this Amber, and thanks everyone for saving your bottles and/or spreading the word! My husband was born and raised in Malawi and we heard about this project a couple months ago. I have been saving my bottles but haven't mailed my first round yet. I can't believe I...

Whoo hoo! Thanks for the heads up, I hadn't even thought about the fact that the 5th is a SUNDAY. I'll be watching!

You are welcome! I definitely understand your concerns about the possible impact this could have on her moral. I also completely understand and agree with trying to have as much info possible prior to a doctor's visit. I've done the same thing many a time when faced with something new. But...

I'm so sorry for your loss Lori. Thank you for sharing a bit of Billy's story for us, how wonderful that he lived for 15 years with new lungs. I'll be thinking of you and his family as you grieve his loss. Take Care, Autumn

Hi Mep! I just wanted to firstly say WELCOME! :) I know it can be scary to come out of "lurkdom". I hung out there for a long too! I don't know anything about MAC, sorry! I hope you will get some good responses. I do, however, understand your dilemma regarding quality of life vs...

Congratulations Amber! You look amazing, what beautiful photos! Thanks so much for sharing with us, it's wonderful to see something so happy. :) Autumn

Yep, you're right, not a lot of info floating around on here. Megan (mneville) is the main person that comes to mind who has shared specifically about IVF/PGD. I know you're looking for several other viewpoints, but in regards to questions you have about the actual IVF/PGD process maybe you...

Hi Helen! Sorry, I don't have any personal advice, as I have not been in your shoes. Hopefully you get some helpful responses, but here is an older thread that may help a little in the meantime: http://forum.cysticfibrosis.com/threads/44857-Another-baby?highlight=mneville Take care, and best...

Such exciting stuff! Thanks for keeping us in the know. :) Autumn

Oh what a bummer. I guessed that it was that they were blowing as opposed to policy, but you never know because hospitals are always changing/updating policies. Ask her if a PICC is an option at all, like I said it may not be. I know that what I mentioned about interventional radiology...