Recent content by wcherri

hello again, I agree with Kristan about checking out a PCD clinic. I travelled from Chicago to North Carolina this year to meet with someone at UNC. Although my PCD testing seems to be going in the direction of "negative" for PCD, it will be good to rule it out since my symptoms lean toward CF...

emt, did you move to Florida? I'm curious what else you may have found out since your original post. My husband and I are considering moving to Florida (from Chicago). The winter months are too brutal for us. We are looking for an accredited CF Center as well as a good Transplant center...

Thanks Ian! You've done amazing work for the CF community. Just Breathe http://www.ianpettigrew.com/just-breathe-cystic-fibrosis.html Salty Girls http://www.ianpettigrew.com/salty-girls.html I look forward to seeing what your plans are with bring more awareness in the area of transplant and...

Don't give up. I'm 46 years old with CF symptoms. One Delta F508 and one unknown CFTR mutation. My sweat tests are all over the place. I was diagnosed at age 4 with a positive sweat test, but as an adult I no longer test positive with sweat tests. I have seen specialists in three states and...

Hi godawg82, I'm so glad to see your post. I am 46 and was,diagnosed with CF at 4 y.o. via sweet test. My situation is similar to the first man you described (with the exception that I did not have a late diagnosis). I am pancreatic sufficient and have chronic pseudomonas. My genetic...

Using EOs Safely Hello, I recently started looking into essential oils (eos) as well. My main recommendation is to research how to use them safely. There are several quality brands who sell eos; however, they do not always provide safe recommendations. There are many eos that are not considered...

Husband - Living life to the fullest My husband. He is my primary motivation. Sometimes it's because I simply want to stay healthy enough to be around so that we can continue to grow old together. The biggest inspiration he offers is that he also has CF and I admire how he doesn't let things...

Recent negative sweat tests Interesting topic! I am 46 years old and recently had two sweat tests with results in the 20s (negative for CF). Prior to this. I have about a dozen sweat tests done when I was a child. My results were never negative (only positive and what they called...

Atypical CF...perhaps Hi Madmax33, I can relate to some of the things you are going thru...not everything. I was diagnosed via sweat test when I was 4 yo and treated for CF ever since. I had about a dozen sweat tests when I was a young child (which seems uncommon). They were all positive...

Looking at the bigger picture There’s some interesting feedback here. I realize we have repercussions with the way we handlesituations like this. We definitely haveto pick our battles and keep in mind that what we do may have a good short-termoutcome…but the long-term outcome may create...

Links: Care of Nebulizers in the Hospital Link to CFF.org page: http://www.cff.org/aboutCFFoundation/NewsEvents/2014NewsArchive/7-2-CF-Infection-Prevention-Control-Guidelines.cfm Direct Link to August 2014 PDF: http://www.jstor.org/stable/10.1086/676882 Care of Nebulizers in the Hospital...

I toss my nebs after each use. :) Shay, I'm so glad you are another advocate for this! I'm amazed that neb cup sterilization is not always a priority in the hospital setting. A couple of years ago, I insisted on having my neb cups switched out daily after they were rinsed out with tap...

CF diagnosis questioned...after 40 years Very interesting thread. I am currently looking into testing for PCD (primary ciliary dyskinesia) after being treated for CF for more than 40 years. My Pfts are currently in the 40s. I was diagnosed by sweat test at age 4, but now I test positive on...

Hi Melissa75, I have been using Replesta (50,000 ius) weekly. It has helped a great deal in addition to the twice daily Aquadek capsules. Since I order Cayston at Foundation Care Pharmacy, I receive this free with each order. It is a larger chewable wafer. Wendy 45 with CF (Dx at 4)