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Hi Carrie, Yep, you've heard correctly, it's Dr. Murphy. He's the only adult CF doc in Omaha. I really like and trust him. I was very reluctant to transition from peds, but they finally kicked me out a few years ago at age 29. ;) I would have been happy to stay with Sammut and Columbo...

Hi Vera, You can add me to list of Cayston lovers! :) I can't tolerate Tobi, and am allergic to Colistin, so Cayston has been a God send for me. Good luck to you, I hope it does the trick! Autumn 32 w/CF

This. Very well said Steve. Those are pretty much my exact thoughts on this subject, however you stated them much more eloquently than I have been able to. That's not to say that my heart doesn't break for this little girl and her parents. As a mother, I can't even BEGIN to imagine...

Hi Big Star, The only hormone testing I have had done was when I was going through my fertility workup years ago. They did the "cycle day 3 labs" (3rd day of menstruation). All of my hormone levels were good, except my thyroid stimulating hormones were a little high. They ordered some...

Emer, with gall bladder surgery you might not be able to use the vest right away. I'd ask the surgeon, and make sure he understands what your vest is and what it does. There could be a risk of hemorrhaging. I know it's not the same AT ALL, but after I had my daughter I was told not to vest...

Very interesting read, thanks for posting! I'm not sure how I feel about the whole subject.......On one hand I'm glad the CFF is profiting because they can turn around and put money back into research. On the other side of the coin, I also wish that Kalydeco was more affordable, and wonder...

Hi A, I would start by asking your husband's CF doc if they have a reproductive endocrinologist that they recommend. Our CF clinic refers all their patients interested in pregnancy to the same RE clinic. They have a lot of knowledge of/experience with CFers so that is an advantage. If you...

Hi Bailey, I drink a shake with probiotics in it. It's called True Vitality and has 8 billion active probiotic cells. I currently don't drink any dairy (breastfeeding my daughter who is intolerant), so the shake is a vegan/plant based powder. I buy the chocolate flavor, and surprisingly, I...

Yes, Cayston has been my saving grace as well! Love it! I'm a little concerned though because I experienced a little tightness and shortness of breath toward the end of my last cycle. I've been taking it for 2 years now and I'm worried I'm developing the same reaction to it as I do to Tobi...

You're welcome Heidi! I think the others here have given excellent thoughts/advice. I'm sure right now it's all overwhelming and hard to hear, but it's so great that you are seeking out all the knowledge that you can! Regarding testing the other children... Just as others have mentioned...

I haven't tried the podhaler, but nebulized Tobi does the same thing to me. Extremely hoarse, tight chest, wheezing etc. It's awful. It causes severe bronchospasms, despite pre and post dosing of albuterol. At first it took days or weeks to have this reaction, so I toughed out the 28 day...

Ok, aboveallislive posted while I was typing my last response and I've just gotta say... she nailed it exactly! Couldn't agree more with everything she said!

I do know what you mean, but I don't think you'll be making him less healthy with the supplements. And it is more ideal to have him at 50% (if possible) as opposed to 19% because with CF, one exacerbation could knock his weight down. I'm so glad to hear that he is gaining and that you and the...

Hi Emer, I have the same problem. Because of this, the last couple times I have had surgery they have given me an albuterol and saline neb immediately after surgery in the recovery room. I think this really helps to open up and get things moving immediately afterwards. I still felt congested...

Welcome Heidi I'm sorry your little one has CF, but glad you have found this website. You will find a lot of support and info here. Wow, this is a loaded post. My perspective will be a little different because I am the one cystic fibrosis. My daughter (18 months) does not have CF...

Happy Mother's Day everyone! Autumn

Wow Jane, that is all very AWESOME!! Sounds like you have raised some wonderful kids who are doing great things! Happy Mother's Day! Autumn 32 w/CF

Excellent question Cyril! I have the slouch AWFUL. I try to concentrate on sitting up straight, but that lasts all of 30 seconds until I forget and I'm once again hunched over. I have considered buying one of those bra-like contraption things that make you stand straight, however I read that...

I'm so sorry, I have no insight to offer. I just wanted to say that I'm so sorry to hear you and your little guy are going through this! I hope you can find help and support here. Hang in there momma, and keep us posted! Take Care, Autumn 32 w/cf

The SSA is hosting a special teleconference regarding the proposed changes for the cf community this Friday, May 10th. Members of the cf community are invited to call in. Please see the link for info on how to participate...