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8/28/2017

Living with Cystic Fibrosis


Diagnosed at birth with cystic fibrosis (CF), Makenzie Fleshner Rentfro has fought the disease relentlessly every day for the last 26 years. That’s why she has been active as a member of the committee for the annual Shelby County Cystic Fibrosis Event. She says, “It’s time CF stood for cure found.”
 
According to the Cystic Fibrosis Foundation, about 1,000 new cases of CF are diagnosed each year. CF is a life-threatening illness, caused by a defective gene and its protein which manufactures a sticky mucus that affects the lungs and digestive systems. This mucus impairs breathing, invites lung infections, and does not allow for proper digestion of food. Morning and bedtime routines include time-consuming breathing treatments to keep the lungs healthy, while meals and snacks must be accompanied by dozens of enzyme medications to aid in digestion.
 
Rentfro says it has been a rough year for her CF. She was hospitalized in January and again in June for the disease. In July, with an already poorly performing immune system, she was under attack by a deadly virus and thought it might win.
 
“People don’t know how hard it is to endure this disease,” said Rentfro. “It comes with a dogged fight that wears on you spiritually, mentally and physically. There is no time off from this illness. My routine means I have to attend to a routine in the morning, noon and night every single day with breathing treatments and medications, plus I have to take extra precautions to guard my health. For instance, I was with some of my best friends a couple of nights ago. Since I was already coughing, we had to skip our plans for a campfire. I love them for being so considerate, but it’s difficult to ask so much of them.”
 
Rentfro said, “Meliah Miller was a mentor to me. Like so many beautiful souls, her time on earth was so small. She died at 24. I was eight-years-old when she passed away. Meliah’s loss is still devastating to me. That’s why I want every day to count, and I try to rise the challenges of CF in a sassy, spunky way. If I don’t live every day to its fullest, I feel I am letting her down.”
 
Just as Meliah mentored Rentfro, Rentfro tries to help others with CF. She calls two special friends, one in St. Louis and one in Kentucky, her cysters. Cysters is a term coined by CF survivors, and it means these special friends are her sisters in cystic fibrosis. She says they call and Snap-Chat constantly to help one another. In a sense, they have become a support network for one another. Rentfro added, “Fighting a chronic illness is difficult, and depression can become part of that fight, too. Banding together with others like us helps us survive.”
 
Rentfro continues, “I am so fortunate compared to my cyisters. My friend in Kentucky is on oxygen and will be for the rest of her life. My friend in St. Louis is in the hospital every month. Not long ago, my friend in Kentucky and I talked about our lung functions. I said I was ill and my lung function had fallen to 50. My Kentucky friend said she remembered having a lung function of 50 and how much better she would feel if she could get to that level again. We also talked about how much we enjoyed LipSense. LipSense is a designer lipstick cosmetic company. It’s quite expensive. I talked to a LipSense dealer who gave me a great deal, and I was able to send my cyster the starting set. She called me crying and laughing because it meant so much to her. It gave her motivation to fight CF through a very tough time. It helped her. I feel like if we aren’t here to help each other out, why are we here?”
 
On Saturday, September 30, the Shelby County Cystic Fibrosis Event will take place at the Forest Park in Shelbyville. Registration for the Great Strides Event for CF will begin at 8:30 a.m. The walk will take place from 9-11 a.m. The walk is a fundraiser, and individuals and teams are encouraged to enter. The first mile of the walk is dedicated to former Shelbyville resident, Meliah Miller, who lost her battle with CF at the age of 24.
 
There will also be a bike-a-thon and a trike-a-thon for children at the event. These fundraising events are both parts of Abbie’s Ride. Information will be coming soon on registering your student for these events.
 
HSHS Good Shepherd Hospital is a proud sponsor of the Shelby County Cystic Fibrosis Event. For more information on how you can register to walk at the Great Strides CF Event to support survivors like Makenzie Rentfro and to remember those lost like Meliah Miller, please visit shelbycf.org. 
 
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About HSHS Good Shepherd Hospital
Since its inception in 1916, HSHS Good Shepherd Hospital in Shelbyville (GSS) has been dedicated to excellence in healthcare for those living and visiting their communities. GSS has accomplished this by providing comprehensive health services and meeting the needs of patients served through their compassionate care, business integrity and community responsibility. GSS provides a 24/7 emergency department that is fully staffed by physicians and highly-trained nurses, and also features inpatient and outpatient services, including a 24-hour laboratory and an imaging department that meets today’s highest standards for diagnostic imaging technology. GSS has an advanced surgery department and an acute inpatient care unit. Dedicated to being a hometown hospital, GSS’ home health and rehabilitation departments are committed to excellence with a team of professional nurses and therapists providing a variety of medical services and rehabilitative therapies, all designed to help patients heal in their own environment. The group of visiting specialists in the outpatient clinic works closely with GSS to help keep the healthcare services local even if a specialized procedure or exam is required. GSS strives to be the first choice for the community’s healthcare needs. For more information about HSHS Good Shepherd Hospital, visit www.hshsgoodshepherd.org.    


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