Trikafta: The Miracle Drug That May Not Be a MiracleSix months ago, I started the miracle drug, Trikafta. Six weeks ago, I stopped it. Why? Side effects. They say the definition of madness is doing the same thing over...reactions9comments
The Second COVID Vaccine Wasn’t Easy But It Was Worth ItA quick month flew by before it was time to receive my second COVID vaccination. (Well, I guess as quick as a month can go while in isolation in your...reactionscomments
Pursuing IVF Treatment for Our InfertilityAs a result of Trikafta, there’s been a huge baby boom in the CF community among women. As much as I am happy for those women, I am sad for...reactionscomments
Finding Credible Health InformationThere’s a lot of health information available on the internet these days. From personal blogs to online magazines to government websites and beyond, advice about your health is at every...reactions1comment
Receiving My First Dose of the COVID-19 Vaccine with CFEvery Thursday, I tried to tune into Ohio’s Governor, Mike Dewine's press conference to the public about COVID-19 updates. Mostly, I was looking for hope of when I could expect...reactions1comment
All About My Partner's CF Carrier TestingCF genetic testing is an important step in both the diagnosis of CF as well as determining if someone carries the CF gene without actually having the disease. Many parents-to-be...reactionscomments
Five Favorite Pandemic Self-Care Activities for CFHow have you de-stressed this past year? The pandemic, political divide, disruption of routine doctor's visits, and isolation from friends and family has really highlighted the care my mental health...reactionscomments
Why Are My Hands So Wrinkly?Everyone has experienced hand and feet wrinkling at some point in their life. When we are young, we quickly learn that if we submerge our hands and feet in water...reactions10comments
Community Views: What People With Cystic Fibrosis Do Not Talk AboutSo much of the pain of cystic fibrosis is invisible. The diagnosis itself is not one that outsiders can visibly see, so conversations about cystic fibrosis are not often common...reactionscomments
Trying to Conceive with CF: My IUI ExperienceAfter our fertility testing was complete, we met with a Reproductive Endocrinologist to discuss the treatment plan and various success rates. I was a bit nervous as there are so...reactionscomments
My WalkerIt all started a few years ago when I started having joint pains. It was as random as can be and I was very taken back by it. The pain...reactionscomments
Adjusting to ChangesIf you’re on medication, then you’ll recognize this feeling. You meet with your doctor and they suggest taking a new prescription or over-the-counter medicine, for either an issue that is...reactions2comments
Four Lifestyle Changes That Improved My CFHow many times have you heard the following advice: you should drink more water, eat lots of fruits and vegetables, and make sure to exercise? A bunch, right! Why? Because...reactionscomments
Iron Supplementation in CF - Part 1Anemia, or iron deficiency, is one of the most common nutritional deficiencies in the world. Furthermore, people with cystic fibrosis (CF) are at an increased risk of developing anemia: 10%...reactionscomments
Preparing My Advance Directive at 28I'm sitting in an exam room and the nurse asks me, "Do you happen to have an advance directive or power of attorney?" Suddenly, a wave of nerves comes over...reactionscomments
Parenting and FatigueBeing a parent is a tiring job, and often, life with a chronic illness often comes with fatigue. Both together can be a recipe for complete exhaustion and feelings of...reactionscomments
Nasal Polyp SurgeryNasal polyps are quite common in those of us with cystic fibrosis. It is not something I was even aware of because I had a late diagnosis. In my youth...reactions2comments
Eight Weirdly Unique Experiences of Having CFLiving with CF can be wildly unique, silly, uncomfortable, and frankly, bizarre at times. Being in the CF community feels like a world of its own with its own language...reactionscomments
10 Things That Are Essential for a Hospital AdmissionHaving just completed a 2-week stint in hospital for a lung tune-up, I wanted to share what I wouldn’t leave home without when prepping for a long stay. There are...reactionscomments
Managing CFRD With a Continuous Glucose MonitorBeing diagnosed with diabetes on top of cystic fibrosis can often be a disappointing and hard transition to process. Unfortunately, it happens to a lot of people living with CF...reactionscomments
