1 Corinthians 16:14 ~ Do everything in love.

Sunday, October 4, 2009

More About Life with CF

Happy Sunday everyone! The cool gloomy weather is making me feel lazy today! No rest for the weary as there is lots to do at the Jones' house today. I have copied a great article below for you to read. If you would like to read more about Ronnie: click here to read his blog.

By Stephanie Innes
Tucson, Arizona | Published: 10.04.2009
Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.
The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Singer Gavin DeGraw's "Free" plays on his iPod. Sharpe hates to run; he absolutely loathes it. But he forces himself to do it at least three times a week.
Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There's no cure, and Sharpe already has lost several friends to the disease.
He's garnered national attention recently, having won a contest sponsored by a vitamin company. The contest, titled "Fuel Your Greatness," asked entrants for inspiring stories. He wrote about his running.
A 50-day hospital stay earlier this year inspired the running fixation and a blog titled "RunSickBoyRun," which now gets an average 300 unique viewers per day from all around the world.
And a local executive whose child has cystic fibrosis is helping fund Sharpe's latest project, a soon-to-launch Web site that he hopes will be international in scope. CysticLife is designed to be a hub for his "cystas" and "fibros," and their friends, loved ones and the public.
But not everything is going well for Sharpe — he's set to lose his health insurance.
His mother, Christine Hiemstra, works in accounting for the University of Arizona's Campus Agricultural Center, and all his life Sharpe has been on her health policy. He's been allowed to stay on the insurance into adulthood because state coverage has always been extended to employees' dependent adult disabled offspring over the age of 23.
But a bill signed into law by Gov. Jan Brewer last month eliminates coverage for Sharpe and 360 other disabled adult offspring of state employees. Also cut from coverage are domestic partners of state employees and employees' offspring ages 23 and 24 who are full-time students. Altogether, about 2,200 people will be affected, Arizona Department of Administration data show.
Though the law took effect Thursday, those slated to lose their insurance are not expected to be cut from their plans until Nov. 24 at the earliest, state officials say. The legislation is still under legal review.
"I have faith," Hiemstra said. "I just don't believe the state will look at all these disabled adults and kick them to the curb."
Sharpe shares his mother's positive attitude. He credits it with keeping him healthy in the face of an illness that is the most common fatal genetically transmitted disease among North America's white population.
"I kind of signed a lease with God on my life. At some point, I'm going to have to return it to him. But I'm going to go way over on the miles," Sharpe said. "We do have more control over our CF than we hold ourselves accountable for. My lung function has gone up 10 percent since I started my running blog."
When Sharpe was born in 1980, the life expectancy for a cystic fibrosis baby was 20.
Dr. Mark Brown, a professor of clinical pediatrics at the University of Arizona who has been treating cystic fibrosis patients since 1983, said the UA's Cystic Fibrosis Center has a patient who is 69.
While he stressed that's rare, Brown also noted that survival rates have been steadily increasing due to better treatments and improved drugs.
The development of artificial enzymes that help those with cystic fibrosis to digest their food was a huge breakthrough during the 1960s. Before that, many children died of malnutrition, Brown said.
Sharpe takes nine pills containing artificial enzymes before each meal.
Because of digestive troubles, most people with cystic fibrosis are thin. And many, including Sharpe, have raspy voices from coughing and from some of their inhaled medications.
Sharpe is not thin. He stands nearly 5 feet 9 inches and weighs 185 pounds. Growing up, he played football, soccer, basketball and baseball.
His lung function isn't as strong as it was when he was in high school, and he now spends more time in the hospital than in the past. His average now is 90 days per year. He never gave up athletics, but after his illness earlier this year he decided to make a firmer commitment to fitness.
Each morning, he walks and coughs to remove what he calls the "junky stuff" from his lungs.
"If I eat too late or shower too early, I'll throw everything up," he said last week during a walk through his parents' midtown neighborhood with his dog, Jezzabel, and his girlfriend, Mandi Melin, 22. "My food digests really slow. Throughout the night I'll be coughing and swallowing mucus without even knowing."
He follows the walk with a shower, where he coughs more.
"The shower sounds like a war zone," Melin said.
After his shower, he begins the first of his four daily treatments. Each lasts 45 to 75 minutes. He puts on a vest with built-in equipment and that sounds like a washing machine and pounds his chest to help shake mucus from his lungs. He also uses a nebulizer, which delivers medications directly to the lungs. Before Sharpe got the vest, Hiemstra had to pound her son by hand — twice a day for 20 years.
During and between treatments, Sharpe is on his computer. He sends out short messages by Twitter, writes blog entries and works on the launch of CysticLife. Its funding came from local executive Court Gettel, whose son, Walker, has the disease. Gettel and Sharpe met at a fundraising gala last year.
"Ronnie has a lot of passion for life," Gettel said.
Melin said Sharpe is often on the phone with parents of newly diagnosed children, and also with teenagers who often want to speak with someone other than their friends or parents. Sharpe is a frequent presence at Cystic Fibrosis Foundation events in both Tucson and in Phoenix, where Melin lives.
RunSickBoyRun has sparked emotional debate by posters on issues such as whether people with the disease should be working full-time jobs, and what parents should do about having more children if they are both carriers of the cystic fibrosis gene, which means there's a 25 percent chance their baby will be born with the disease.
Melin graduated from Syracuse University in December and now works full time for CysticLife. She also helps with the RunSickBoyRun blog and is a constant by Sharpe's side.
"Mandi is my rock," Sharpe wrote in a recent blog. "I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. . . . Mandi does the perfect job of kicking me in the butt, but then bringing me ice."
The risks of exercising with cystic fibrosis include low oxygen levels and ruptured blood vessels in the lungs, which is extremely dangerous. That's why while Sharpe runs, Melin runs alongside, constantly checking phlegm he spits out for spots of blood.
Melin also sets Sharpe's running goals. He'd like to run one of the cystic fibrosis organized walks, which are 5 kilometers. But his runs are often difficult. Last week, he said his phlegm felt like Super Glue, and he couldn't speak for several minutes after he was finished.
Brown, the UMC doctor, said exercise is good not only for clearing out the mucus but also because the big breaths required for exercise help keep the lungs open. And exercise, among other things, releases hormones that promote the development of muscle tissue, so the benefits outweigh the risks, Brown said.
While Sharpe and his mother have faith that the insurance problem will sort itself out, Melin is more concerned. One of his recent hospital stays ran up a bill of nearly $400,000. He's had numerous surgeries, and his medications alone are thousands of dollars per month.
Sharpe has applied for the state's form of Medicaid, the Arizona Health Care Cost Containment System, in the past. Though he doesn't have an income, he has too much money in the bank to qualify, he said.
Melin said the solution may be marrying Sharpe and finding a job with good enough benefits to cover them both.
For now, Sharpe and Melin remain hopeful that a legal review of the new legislation will rule in Sharpe's favor. In the meantime, Sharpe is focusing on increasing awareness of a disease he believes will be cured one day.
And he continues to run.
"When you are feeling sick, that's when you want to push harder," he said. "For most chronic illnesses, a lot of it is your mentality. If you sit on a couch all day and do nothing but feeling sorry for yourself, you are going to die."
Contact Star reporter Stephanie Innes at 573-4134 or sinnes@azstarnet.com.

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