Stories

On Thursday morning, 11 August 2022, I started Trikafta. My lung function FEV1(%) is 55-60 and FEV1(L) 1.8L. In the past year I reached 66% at 2L but I wasn’t...

Before my CF diagnosis (at age 67) I was hospitalized for 4 days on the usual antibiotics, nebulized medications, chest percussions and respiratory therapy visits. The steroid mania was at...

Cystic fibrosis (CF). I have been living with this disease from birth. It affects my life so much and hurts me. I was told it was a family illness which...

I was born in 1969 and adopted at 2 weeks old by my mother who was a nurse. I was diagnosed with CF at 18 months in 1970. I had...

So as you guys may know I posted about being in hospital for a number of months. The longest and scariest admission of my life! I hope that I, or...

Hello all. This is my story. I was really let down medically. 30 years ago, when I was 7 months pregnant with my second child, they was giving pregnant women...

My baby brother was born with CF. He struggled as a child, teenager, and young adult. We were always told that he wouldn't live to be 16, but let me...

The first year on Trikafta was the best my 9 year old has felt, but he picked up every germ a year and a half in. First, he got strep...

I was diagnosed with CF at birth, and currently am 44. I am lucky enough to be part of the evolution of changing treatments. If I look back 30-40 years...

This is just brief since I can have an attack at any time. So, I wake up at around 8:30am to take all my meds nebulizer, inhalers, vest, mental health...

If I was granted the ability to make one wish, what I would wish for would shock many people. I would wish for all CF patients around the world to...

My lungs are failing. I have CFRD now along with high blood pressure and high heart rates, I have found I am more tired, get no sleep, hurt a lot...

When things get bad I have discovered “Quiet Time”. I typically shut off all noise, TV, radio, etc. I like to lay down, close my eyes and most of the...

When I’m feeling stressed or anxious, most of the time I turn to my dog. He’s my #1 supporter and my best friend. He knows how to really cheer me...

When cystic fibrosis or other things in life get overwhelming, it helps me to do something creative or calming like crocheting while watching a favorite show, coloring, watercolor painting, bracelet...

When I'm having a stressful, or bad day because of everything that comes with CF I enjoy making some hot tea, turning on some music, and just sitting still for...

Hello, I will be 50 in June. About 18 years ago when I would get hospitalized my pulmonary rehab person got me into drawing and coloring mandalas. She would teach...

Background: 55-year-old Canadian guy with CF. FEV1 42%. Pretty stable, but in the past few years a lot, and I mean a lot, more productive cough and more flare-ups that...

Hello, I am a 57-year-old woman, who was first diagnosed with a very rare form of CF. I was diagnosed at the age of 26. I then had to have...

It has taken me over 30 years, a Covid19 Pandemic & the gentle cattle prod of my friend and publisher to tell Cody's story... my way of saying thank you...