Organ Donation – Surprising Facts
Cystic Fibrosis patients make up 12 percent of the waiting list for lungs. New York State changed the legal age of consent for organ donation from 18 to 16 years old to improve number of donors. Read more below: Last week, New York State changed the legal age of consent …
Probiotics and Prebiotics in Food – benefits in the cystic fibrosis diet
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, …
Cystic Fibrosis treatment: lung transplant facts and member experiences
Lung transplantation is something a person with Cystic Fibrosis 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. It is a last resort in terms of Cystic Fibrosis treatment, but can be a life-saving procedure. …
Cystic Fibrosis testing: Genetic and Rare Diseases Information Center
The National Institutes of Health (NIH) publishes up-to-date information about cystic fibrosis testing 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 to …
Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions
For many patients, chronic sinusitis is a part of their many Cystic Fibrosis symptoms. From the Mayo Clinic, about sinusitis: The goal of treating chronic sinusitis is to: Reduce sinus inflammation Keep your nasal passages draining Eliminate the underlying cause Reduce the number of sinusitis flare-ups Treatments to relieve symptoms …
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 …
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 …
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. How …
Cystic Fibrosis treatment: 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 …
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 …