Adult in Disbelief: Part 2This is Part 2 of the story from CommunityMember41a3b6 I had been battling chronic pancreatitis for so many years receiving the exact same care. Hospital admissions were a necessity to...Reactions0reactionsComments0 comments
Adult in Disbelief: Part 1I immediately questioned everything that happened to me from a medical standpoint. Recalling nearly every single horrible experience being dismissed as having another stomach virus. This was always the outcome...Reactions0reactionsComments0 comments
My Trikafta Experience in AustraliaOn 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...Reactions0reactionsComments4 comments
Spain or BustBefore 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...Reactions0reactionsComments0 comments
How I Lived My Life with CFCystic 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...Reactions0reactionsComments0 comments
My Health History with CFI 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...Reactions0reactionsComments0 comments
On the Road to Better HealthSo 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...Reactions0reactionsComments0 comments
30 Year WaitHello 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...Reactions0reactionsComments0 comments
My Brother, My HeroMy 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...Reactions0reactionsComments0 comments
My Child's Trikafta FlareThe 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...Reactions0reactionsComments1 comments
Cycling Across America with CFI 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...Reactions0reactionsComments2 comments
A Day in the Life of a CF WarriorThis 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...Reactions0reactionsComments0 comments
One WishIf 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...Reactions0reactionsComments1 comments
CFRDMy 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...Reactions0reactionsComments0 comments
My quiet timeWhen 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...Reactions0reactionsComments0 comments
What helps me relax..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...Reactions0reactionsComments0 comments
What Helps Me RelaxWhen 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...Reactions0reactionsComments1 comments
What Helps Me RelaxWhen 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...Reactions0reactionsComments0 comments
What helps me relax when Cf stresses me outHello, 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...Reactions0reactionsComments0 comments
Trikafta - first 3 daysBackground: 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...Reactions0reactionsComments3 comments