organ donor ribbon small
FAQsLiving With CFTransplants

Organ Donation – Surprising Facts

Last week, New York State changed the legal age of consent for organ donation from 18 to 16 years old. This shift is expected to improve New York’s number of donors significantly. “…only 24 percent of New Yorkers ages 18 and up have enrolled in the NYS Donate Life Registry …

READ MORE →
Probiotics and Prebiotics
FAQsGastrointestinal DiseaseLiving With CFNutritionResearch

Probiotics and Prebiotics in Food

PROBIOTICS yogurt kefir milk buttermilk soy/nut milks fermented soft cheeses (also gouda, cheddar, swiss, parmesan) kombucha tea sauerkraut (unpasteurized) kimchi miso soup tempeh sourdough bread olives sour pickles (not pickles made in vinegar) PREBIOTICS leeks asparagus chicory Jerusalem artichokes kale (and other dark leafy greens) garlic onions whole grains (barley, …

READ MORE →
transplant
FAQsLiving With CFTransplants

Lung Transplant Facts

Lung transplantation is something a person with CF might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. Here are some numerical facts about lung transplants. The number of reported lung transplant surgeries worldwide has more …

READ MORE →
ncib logo
DiagnosisFAQsGeneticsLiving With CF

Genetic and Rare Diseases Information Center

The National Institutes of Health (NIH) publishes up-to-date information about testing for cystic fibrosis on its Genetic and Rare Disease Information Center webpage (GARD). This is their FAQ about testing and resources. It discusses what situations warrant genetic testing, what tests are available and how much they cost, and how …

READ MORE →
sinuses
FAQsLiving With CFRespiratory DiseaseTreatments

Mayo Clinic and Chronic Sinusitis

From the Mayo Clinic: Treatments to relieve symptoms Your doctor may recommend treatments to help relieve sinusitis symptoms. These include: Saline nasal irrigation, which you spray into your nose to rinse your nasal passages. Nasal corticosteroids. These nasal sprays help prevent and treat inflammation. Examples include fluticasone (Flonase), budesonide (Rhinocort …

READ MORE →
smiles
FAQsFinancialLiving With CFSupport

Social Security Disability Benefits for people with Cystic Fibrosis

Introducing Deanna Power, the Director of Community Outreach for Social Security Disability Help. She wrote this article for our community at CysticFibrosis.com to help shed light on the subject of applying for disability benefits.   Applying for Disability Benefits with Cystic Fibrosis     by Deanna Power   Cystic fibrosis …

READ MORE →
costbig
FAQsFinancialLiving With CFSurvey

Financial: Your Questions from the 2015 Survey

Your Financial Questions From Our Survey in April 2015   How can you lower our out of pocket expenses in medications? Where else can we find financial help for the high cost of copays? Where can I get help with expenses? The high cost of medicines and machines need to …

READ MORE →
pancreas
FAQsGastrointestinal DiseaseLiving With CFTreatments

Enzymes – Frequently Asked Questions

  Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. …

READ MORE →
Hypertonic Saline
FAQsLiving With CFTreatments

Hypertonic Saline Questions

These question were posed by CysticFibrosis.com and answered by: Michael McPeck, RRT Respiratory Therapist   What is hypertonic saline (HTS)? HTS is sterile water into which common salt (sodium chloride, NaCl) has been dissolved.  The degree of salinity, or salt concentration must be greater than 0.9% in order to be …

READ MORE →
Self Management Tree
AdheranceFAQsLiving With CF

YOUR DATA! Your Questions on Self Management

Here are your questions on Self Management from our Survey last Spring What paperwork should I keep or throw away? More up to date convenient equipment Easiest ways to clean a nebulizer? How can I learn more about the various nebulizer on the market, and which are best? How much …

READ MORE →