CFLifeCare Blog

The Connection Between Cystic Fibrosis and Surfing
Posted on June 6, 2017 in

Several years ago, doctors in Australia noticed that surfers with cystic fibrosis were living longer and had better overall lung health than those who didn’t surf.  They began to examine the reasons behind this and they discovered that those outcomes were due in large part to the salty water and air that the surfers immersed themselves in on a regular basis.  By inhaling the saltwater mist, it was actually rehydrating the lining of the lungs and allowing people with CF to more easily eliminate mucus and bacteria. This discovery led researchers to develop what is now known as hypertonic saline, which is a saltwater solution that is inhaled into the lungs and used daily by those with CF.  In a way, people with CF are having a mini-surf session when they use hypertonic saline.

How can I change my mail-order pharmacy to a specialty pharmacy?
Posted on June 6, 2017 in

By Stacy Motenko

With the ever changing landscape of healthcare, there is less and less opportunity for patients to choose where they receive care and what pharmacy they use. Many patients are being mandated by their insurance companies to use their in-house mail-order specialty pharmacy for their specialty medications. If the patients do not comply, they may face penalties or not be able to get their medications covered by insurance. 

Are clinical trials for cystic fibrosis right for you?
Posted on May 29, 2017 in

Clinical trials test medications or medical procedures before they “go to market” that aim at treating cystic fibrosis symptoms.  In order for a medication to go from test tube to patient, it has to pass through several stages of clinical trials that test safety and efficacy. Clinical trials are conducted in a series of steps, called phases and each phase is designed to answer a separate research question.

Mental Health for Caregivers
Posted on May 24, 2017 in

Written by Rikki Larson, LCSW

Much research has been done on the mental health of people with chronic illness, but until recently, not nearly as much has been done on the mental health of their parents or caregivers. One of the scariest things a parent can hear is that their child has a chronic, life-threatening illness.

Traveling with Cystic Fibrosis
Posted on May 16, 2017 in Patients, Caregivers

Written by Stacy Motenko

Travel has always been a passion of mine - so much so that I decided to study abroad in Sydney, Australia when I was a junior in college.  Then a few years after college, I moved back to Australia for seven months. I have eaten sushi in Japan, seen the ruins in Italy and been snorkeling in Fiji.

But as glamorous as that may sound, traveling with cystic fibrosis is complicated and requires immense preparation and organizational skills. I have learned the hard way when I am not adequately prepared for a trip or when my medical equipment fails in a foreign country.

What is Cystic Fibrosis?
Posted on May 10, 2017 in

Cystic fibrosis (CF) is an inherited disease that affects more than 30,000 people living in the United States.  In CF, a defective gene causes the buildup of sticky mucus in the lungs, pancreas, and other organs. For people living without CF, the mucus in the body is watery and protects the linings of these organs. In patients with CF, however, the mucus is abnormally thick and harmful to the body. The mucus can clog the airways in the lungs, limiting the person’s ability to breathe. When the airways are clogged, bacteria can become trapped in the lungs, which can lead to serious infections, lung damage, and eventually respiratory failure (a life-threatening condition in which not enough oxygen passes from the lungs into the blood).

Posted on May 4, 2017 in

By Kim Kromash, CF Mom

Having two young boys (one with cystic fibrosis) can make things pretty difficult in finding something to eat that they enjoy. I came across these recipes and have tried quite a few of them.

Posted on April 3, 2017 in Patient Spotlight

When you first meet Scott, you realize how full of joy and life he is. His contagious smile fills your heart as does his stance on life. Scott was diagnosed with CF when he was two years old in 1970 when the life span of a child diagnosed with CF was only five years old. His parents, new to the disease, constantly consulted with their doctor who advised them to let him live as normal of a life as possible. When he was four, Scott wanted to play ice hockey and just as his doctor advised, his parents allowed him to play and he’s been playing ice hockey ever since.

Time management and organization
Posted on March 28, 2017 in

By Stacy Carmona

Individuals with CF have many responsibilities associated with care and more hours of treatments and airway clearance than most people can even imagine.

What you should look for in a specialty pharmacy and why?
Posted on March 27, 2017 in

By Stacy Carmona

As a CF patient, I know that my pharmacy plays a very important in my cystic fibrosis care regimen.  Subsequently, it is crucial that I trust them to ensure they will get my medication on time and with ease.  Too often, the retail pharmacy experience is frustrating and cumbersome, which is why so many people with chronic illnesses prefer to use a specialty pharmacy.

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