Hospitalization Creature Comforts...Have you ever heard of creature comforts? I’ve listened to this saying occasionally. Creature comfort is something that helps people feel physical comfort. This can look like certain foods, specific... By Katelyn Harlow3 min readBookmark for laterReactions 0 reactions Comments0 comments
hii...So I got cystic fibrosis and I've always wondered:why can't I smell?? I cant smell anything! it really sucks bc people are like: "oh my gosh that steak smells soooo...Reactions 0 reactions Comments1 repliesTips & AdviceCoping
Best types of digestive enzymes...I’m a VF carrier and have pancreatic insufficiency. I haven’t been able to resolve my digestive issues fully with prescription enzymes (tried creon, zenpep and now vital nutrients pancreatic enzymes)...Reactions 0 reactions Comments1 repliesGI Symptoms
Hair loss...I'm a woman in my 40s with CF. I'm on a modulator. Recently I have started having my hair fall out. It's coming out in clumps and filling out my...Reactions 0 reactions Comments1 repliesDepressionTrikafta
How Old Were You When You Were Diagnosed?...I'm just curious because I was diagnosed when I was only 6 months old, but my brother was diagnosed at 4. So, when were you (or your loved one) diagnosed...Reactions 0 reactions Comments0 repliesDiagnosis
Carriers pain, cramping, gas, and constipation diarrhoea kidneys and duct inflamation...My elderly parent in the family with CF ( but has never been tested for carrier status ) As I understand it CF carriers, especially the elderly pancreas do not...Reactions 0 reactions Comments1 repliesGI SymptomsCarriers
Dealing with typical illnesses with my CF-er...A few months ago, we went on a family vacation to the beach. Because it was early April, I figured the typical winter cold and flu illnesses were no longer... By Meagan Brackeen3 min readBookmark for laterReactions 0 reactions Comments0 comments
I wonder how many people are carriers & only find out after genetic testing during pregnancy?...I have had asthma, eczema & allergies from an early age. My brother has asthma & seasonal allergies. My sister was diagnosed with CF only when she was in her...Reactions 0 reactions Comments0 repliesCarriers
Tilting therapy bed for physio for CF...I have a tilting bed supplied specifically for CF physio, but my boys only used it twice as they preferred the wedge on the floor. If anyone would like it...Reactions 0 reactions Comments0 repliesDaily Treatment
A Letter to My Morning Lungs...Dear Morning Lungs, I’m writing to tell you that you’re doing your best. I don’t blame you for your sluggish mood every morning. I am sluggish and tired too. It’s... By Janeil Whitworth2 min readBookmark for laterReactions 0 reactions Comments0 comments
when a cf child reaches 18 and transitions into being an adult...My husband and I would love to hear from parents/caregivers with a CF child transitioning into the adult world. We are nervous about all the changes we're facing. Insurance is...Reactions 0 reactions Comments1 repliesCaregiving
In Sickness and in Health: Telling my Partner I have CF...I have lived with cystic fibrosis (CF) my entire life, I know it like the back of my hand. With CF being a rare disease, there are still a lot... By Mikayla Bianchin3 min readBookmark for laterReactions 0 reactions Comments0 comments
Will you take our In America survey and help others understand the true impact of cystic fibrosis?...The In America survey is now closed. To better understand the patient experience and realities of living with cystic fibrosis, we are fielding our Cystic Fibrosis In America survey. By...Reactions 0 reactions Comments0 repliesAwareness
New to Trikafta-please respond...Hi. I just started taking Trikafta a week ago after the sickest year of my life. I started it while on levaquin and doxy. I culture pseudomonas and recently had...Reactions 0 reactions Comments2 repliesTrikafta
General friendly question....How is everyone doing?...Reactions 0 reactions Comments1 repliesCopingFriends & FamilyWork & Employment
My Trikafta Experience in Australia...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... By abbeykahui5 min readBookmark for laterReactions 0 reactions Comments0 comments
My breathing and being in pain...I have alots of trouble breathing some days I have to make myself do a little house work but sometimes I think I'm going in circle and not seem to...Reactions 0 reactions Comments1 replies
Dawn...My daughter Dawn had Cystic-Fibrosis. She was born in Oct of 64, and she lived for 32 years. Dawn passed in May of 95. She went to in CHOP Phila....Reactions 0 reactions Comments0 replies
Spain or Bust...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... By P Staes1 min readBookmark for laterReactions 0 reactions Comments0 comments
How I Lived My Life with CF...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... By John121 min readBookmark for laterReactions 0 reactions Comments0 comments
