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Cystic fibrosis sufferer waits for lung, kidney donations

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Posted: Friday, March 25, 2011 12:00 pm | Updated: 4:04 pm, Thu Sep 6, 2012.

By Holly Wise

The Cove Herald

Karen Hollis considers herself a blessed woman. Her son is her hero; her son thinks he's invincible.

Her son, Jason Brady, is waiting for a double lung and kidney transplant.

"The phone call could happen at any time," Hollis said. "I think that's more nerve wracking then anything. When your phone rings, you just go, 'ahhhhhh.'"

Brady, 30, is in end-stage lung disease after living with cystic fibrosis since he was three months old.

According to the Cystic Fibrosis Foundation, the inherited disease consists of a defective gene and its protein product that causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

The Lawrensons

Also familiar with the rigors of waiting for a life-changing phone call are Nathan and Tricia Lawrenson, an Outer Banks, North Carolina couple who received their call on April 2, 2008.

Tricia, 27 at the time, had been on the transplant list for a little over a month.

"When she got the call, she was breathing on one lung with the help of a ventilator," Nathan said on the phone Thursday. "Her case was an 11th- hour type thing."

Nathan stayed full-time with his wife at the Duke University Medical Center and understands the toll waiting can take.

"The wait, especially when you're in the hospital, is especially difficult because you know that unless you get that transplant, you're never leaving the hospital," he said.

Tricia attributes her faith, the love and prayers of her support system and the hope of life to getting her through the waiting period.

"I know the experience I had of waiting in the ICU," she said via email Thurday. "Praying for those new lungs to come soon was the challenge of my life. But looking back and seeing all that I learned and what my family experienced, it has been my life's greatest blessing."

When Brady was diagnosed with the disease, Hollis was told his life expectancy was three years.

"He's beaten all the odds, and now we're just hoping he can beat this one," she said.

Brady has been No. 1 on the transplant list for the past month, after being placed on the list at No. 4 in October.

A new system

In 2005, the United Network for Organ Sharing put into effect a new lung-distribution policy designed to eliminate the waiting list for people over the age 12. The system uses a lung allocation score to determine when someone should receive new lungs, according to the Cystic Fibrosis Foundation.

Individuals are evaluated every six months and factors such as lung function tests, overall health, and the use of oxygen or a ventilator to help the person breathe are all taken into account.

While he was in the intensive care unit at Scott and White Hospital this week, a committee dedicated to supporting Brady was busy getting ready for a fundraiser in Copperas Cove.

Linda Moser, one of Brady's nurses at Scott and White Hospital, rallied the support of the Copperas Cove Saddle Club and Lampasas Riding Club to host a fundraiser for the former Copperas Cove resident.

Brady's transplant surgery is expected to cost $800,000, and lifelong anti-rejection medications are priced at $5,000 a month, Hollis said.

"That alone is a very devastating amount of money," she said. "It just blows my mind."

Even though Brady has health insurance, Hollis said the family still has to pay out-of-network costs and travel expenses.

The Lawrensons also had health insurance, but the copayments can add up to a few thousand dollars a month, Nathan said.

"It's very difficult for anybody to try and do that on their own," he said. "It would be impossible for us to do it on our own."

Two committees were formed to help raise money for Brady. One works in Gatesville, where Brady is from, and the other in Hutto, where Hollis lives.

"We had to have committees," Hollis said. "They are, of course, people who love Jason, who know Jason. We're even getting people who are wanting to do things who have never met Jason."

Moser has known Brady for seven years, and considers her patient a friend.

The fundraiser

The fundraiser is scheduled for 10 a.m. Saturday at the Copperas Cove Saddle Club Arena on Boys Ranch Road.

Moser said the event is free, but those who want to participate in the horse- riding events must register. A silent auction, bake sale, t-shirts and calendars will be available to purchase, she said. Donations also will be accepted. All proceeds go to Brady's medical costs.

"We're just very blessed to have the family and friends that we have, people who love us enough to just jump in and do everything they can to raise a penny for Jason," Hollis said. "It's awesome to have this much support."

Nathan Lawrenson encouraged Brady's friends and family that the best way to help is to let him know they're available at any hour of the day or night.

"Really, you don't need people to do a whole lot for you," he said. "You need people to say, 'We're here for you if you need something.'"

In addition to waiting for a double lung transplant, Brady also is waiting for a kidney transplant.

"He has to have the lung and the kidney transplant to live," Hollis said.

Emotion tugged at Hollis' voice when she spoke of her son and his will to live.

"Jason feels like he's invincible," she said. "He's my hero because he doesn't take things lightly, but he never thinks negatively, either."

A recent phone call from Dallas linebacker DeMarcus Ware is one thing working to keep Brady's spirits up.

"It is all about dreams and hopes and things that keep you going," Hollis said. "That call from DeMarcus Ware really fired (Jason) up, and DeMarcus Ware told Jason that he would meet him...it gives him hope, keeps his dreams alive."

The phone call was arranged by a man on one of Brady's committees who had connections with Jerry Jones, the Dallas Cowboys' owner.

"God puts people in your life that make a huge difference," Hollis said.

For Tricia Lawrenson, the difference started when someone made the decision to become an organ donor.

"This second chance of life my donor has given me has allowed me to find purpose here on this earth and to live my life heartily," she said. "Each breath is a blessing and gift from God."

Contact Holly Wise at hwise@kdhnews.com or (254) 501-7474.

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