Gastroparesis and Cystic Fibrosis – By Meranda Sue Honaker

By Meranda Sue Honaker

Gastroparesis (delayed gastric emptying) is a common complication for many with CF; however, the condition is exceptionally hard to treat due to lack of promotility agents in the United States. In my early 20’s I began to experience Continue reading Gastroparesis and Cystic Fibrosis – By Meranda Sue Honaker

Making it Matter Podcast – CF Nutrition

Making it Matter Podcast Ep. 10 – CF Nutrition

Nutrition is something I love to talk about (well…. ever since I got my feeding tube placed in 2011). It is a vital part of CF care, something that Julia and I approach differently. While my pancreas doesn’t seem to work, Julia knows she is Continue reading Making it Matter Podcast – CF Nutrition

My Gluten Free Experiment Results

By Amy Braid

As I mentioned last month, I read Wheat Belly by William Davis MD and decided to go gluten free for 30 days.  Well my 30 days is up…

I felt no significant difference eating gluten vs not eating gluten.  I did eat a lot more fruits and vegetables and yogurt which I loved.  And I was hungry a lot more too.  But I was eating lots more quantity.  The first week or two I did feel less bloated after eating, and my wrist problems seemed to be diminishing.  But I can’t say that for certain since I was not using it as much as I normally do either.  By the time I hit the two week mark I felt exactly how I did before I started.

One thing that did change significantly…my fasting blood sugars.  They were all in the normal range for those 30 days.  But my post exercise blood sugars were awful.  I crashed every single day I exercised, and that was 4-5 days a week.  Not good.

I only cheated once.  Hand to God I swear.  It was the last week.  We were going to my mother in laws for dinner, and since I make fresh bread a lot this time of year and , I made some the night before.  I had to try a bite when it was finished!  Just a small bite, and I didn’t have any at dinner the next day.  And to be honest I didn’t feel anything negative side effects from sneaking a piece.

So for me I don’t think gluten has any noticeable impact on me.  I was a little disappointed, I won’t lie.  I did hope my lungs would feel better and my wrist would feel amazing and I would not bloat like a balloon with meals.  The first 10 days or so I was excited that I might get there.  But in the end, nothing.  So it is back to gluten for me.  But modified, I will eat less, avoid all the snacks and processed foods (for the most part) and try to maintain the healthy fruits and veggies I was eating for that month.

All in all I don’t think this experiment was a total bust.  It was a learning experience and I tried some new foods I didn’t think I would like, and ended up loving them.  So win win for me!

Trying to Reduce Inflammation for Myself

By Amy Braid

A couple of weeks ago Andrea posted this blog about her experience with going gluten free.  She read a book called Wheat Belly by William Davis MD.  She talked about how much better her joints feel having tried this.   It sounded great!

Continue reading Trying to Reduce Inflammation for Myself

Trying to Reduce Inflammation

By Andrea Eisenman

I am not into fads, especially when it comes to food. I feel my life is complicated enough having cystic fibrosis and a bilateral lung transplant. There is a lot of time spent on taking medications, checking my blood sugars for diabetes and Continue reading Trying to Reduce Inflammation

Cystic Fibrosis Patients Shouldn’t Skip Supplements

http://www.pharmacytimes.com/

Improved diagnosis and treatment has extended cystic fibrosis (CF) patients’ life expectancy into adulthood. Continue reading Cystic Fibrosis Patients Shouldn’t Skip Supplements

OWN IT: Five Years with the G-Tube

This May marks five years since I had my feeding tube placed, or to put it another way, my G-tube has been with my for 1/5 of my life.

It’s a strange thought. For years I rejected the idea of having a feeding tube – Continue reading OWN IT: Five Years with the G-Tube

Raptor Pharmaceutical Launches QUINSAIR™ in Europe

http://www.nasdaq.com/press-release/raptor-pharmaceutical-launches-quinsair-in-europe-20160411-00214

First-in-Class Inhaled Fluoroquinolone Therapy for Cystic Fibrosis Patients
Raptor Pharmaceutical Corp. (Nasdaq:RPTP) today announced its first commercial sale of QUINSAIR™ (levofloxacin inhalation solution) in Continue reading Raptor Pharmaceutical Launches QUINSAIR™ in Europe

AbbVie CF Scholarship Now Accepting Applications from Students with Cystic Fibrosis for 2016-2017 Academic School Year

Scholarship recognizes 40 exceptional students with cystic fibrosis (CF) for academic excellence, creativity, and community service

¾  More than $2.6 million in scholarships awarded over 24 year history of the program

 NORTH CHICAGO, Ill., April 6, 2016 – AbbVie (NYSE:ABBV) today announced that the 2016 AbbVie CF Scholarship, which honors and Continue reading AbbVie CF Scholarship Now Accepting Applications from Students with Cystic Fibrosis for 2016-2017 Academic School Year

ICYMI: Gunnar’s Living with CF Go Pro Series Part 1

Living with CF Go Pro Series
Part One

It seems like I get an email just about every week from a parent telling me that his or her child has just been diagnosed with the cystic fibrosis. The tone of each email is the exact same. There’s some mix of confusion, Continue reading ICYMI: Gunnar’s Living with CF Go Pro Series Part 1