The care of patients with Cystic Fibrosis (CF) has seen amazing advances in the past few years, made in part through the development of CFTR modulators. However, the recognition of the frequency of gastrointestinal (GI) symptoms in our patients is just beginning to emerge. Only recently have publications noted the excessively high frequency of GI issues. Continue reading Advancing the GI frontier for patients with CF
Guest Blog By: Brennen Reeves
If I were to count all of the scars on my body, the ones visible to a bystander at the beach, I’d need your fingers and toes, plus mine. And someone to mark the tallies. Thirty-eight. I’ve counted. From my chest, to my stomach, up to my neck, and down to my ankles the grooves are endless it seems. I don’t think I have any on my back but then again I cannot see my back and I still have trouble with sensation from the bilateral lung transplant I received in 2011, so I wouldn’t be able to feel them either. Continue reading Only I Can Look Into My Mirror
In this podcast, we meet Molly Bigford, a Registered Dietitian for the Adult Cystic Fibrosis Care Team in Grand Rapids, Michigan. Born and raised in Michigan, Molly began working with hospitalized adult patients with cystic Continue reading Cystic Fibrosis Podcast 176: Importance of Nutrition for CF Patients
By Ella Balasa
Rise and shine to start another day! Like most of us, I have limited time in my morning routine, AND I tend to slack on getting my greens for the day. Occasionally, I will eat a salad with my lunch or dinner, but that isn’t enough. The saying also goes… an apple a day keeps the doctor away…That’s definitely something we as CF patients want! Continue reading Green Smoothie Recipe – Healthy and Caloric!
I’m not naïve enough to think that I’m going to wake up tomorrow and find that my life is moving forward with cystic fibrosis in the rearview mirror.
We’re still a little bit away from that moment, but that doesn’t mean I don’t have high expectations for treatment development. Continue reading My Wish List for the New Year By Gunnar Esiason
Making it Matter Ep. 14 – Advocacy and Other Things
After our week off, Julia and I come back with lots to talk about. Right after her NYC marathon effort, Julia shipped off to Europe to tour a children’s CF center in the Netherlands. She talks about how much different care is than Continue reading Making it Matter Ep. 14
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 husband and I usually read the Social Qs column on Sundays in the New York Times. Then we glance at the rest of the Styles Section. He saw that the Modern Love column was about a double lung transplant that almost destroyed a Continue reading Modern Love Column in NY Times–Worth Reading
Like many women, I have body image issues. My legs aren’t shapely enough, my stomach isn’t flat enough, my hips aren’t large enough, etc. And because of CF I add in the bloated belly, skinny arms and legs, and the barrel chest and I am a hodge-podge of awkwardness. Like many women I struggle with my weight Continue reading Body Image Issues
This GoPro video definitely shows a behind the scenes look at my life with cystic fibrosis. I tried to capture the maintenance that my body requires for it to fully function. Beyond that I really wanted to give a first person point of view of my Continue reading OWN IT: Living with CF GoPro Part II