Oakville Beaver, 7 Jun 2012, p. 14

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www.insideHALTON.com · OAKVILLE BEAVER Thursday, June 7, 2012 · 14 By Nathan Howes SPECIAL TO THE BEAVER Resident hopes lung transplant will help him No matter what life throws in his path, the wheels on Rob Alexander-Carew's bike will never stop rolling. The 39-year-old Oakville resident and cycling enthusiast was diagnosed last June with idiopathic pulmonary fibrosis -- a progressive lung disease with an unknown cause, no cure and only one treatment: a lung transplant. But that hasn't stopped him from living his life. "I can do everything I could before, but it just takes a lot more energy and a lot more time to get it done. It takes me longer to get upstairs," said Alexander-Carew. "If I'm playing with my kids, I can't play soccer for two hours. I can play for maybe 10 or 15 minutes." In hopes of raising awareness of the disease, his friend has organized the first-ever Canadian Pulmonary Fibrosis Foundation (CPFF) Indoor Cycling Charity Fundraising Event on Friday, June 15 at the River Oaks Community Centre. "I wanted to do something for my friend. I've known Rob for about three years through teaching cycling classes. His condition has gotten worse," said Robyn Rourke, a Town of Oakville indoor cycling instructor. "It won't help Rob get the transplant he needs, but at least it will draw awareness to the disease." According to the CPFF, pulmonary fibrosis "The symptoms are kind of indistinguishable from chest infection, pneumonia or just a bad cough. After about six to 12 weeks, the cough just wasn't going away," said Alexander-Carew. "I went to see my doctor thinking this is some kind of viral infection that's not getting any better. It came back with pulmonary fibrosis." Because of his condition, he is on oxygen 24/7 and has to carry around three portable oxygen tanks with him at all times. This has become an annoyance, he said. "Each (tank) will go about three or four hours. So I can never go more than nine or 10 hours from home before I have to go back and fill them up. I feel like I'm on a leash," Alexander-Carew said. "If I'm just going to the store, maybe I'll bring one." To make things more complicated, AlexanderCarew said if his wife and two daughters get a cough or a lung infection, he has to "pretty much" move out for the week. He visited Toronto General Hospital last MARTA IWANEK / OAKVILLE BEAVER / @halton_photog month to determine if he's suitable for a lung transplant. Alexander-Carew said he should know breathing is not easy: Rob Alexander-Carew, left, has pulmonary fibrosis, but still cycles the results soon. twice a week. Town of Oakville instructor, Robyn Rourke, has organized the June 15 Canadian Pulmonary "My doctor says I should be put on the list Fibrosis Foundation Indoor Cycling Charity Fundraising event at River Oaks Recreation Centre. immediately. Just waiting would be unproducmeans "lung scarring." The scarring occurs in The scarring obstructs oxygen from entering the tive. He looked at my CT scan and said, `Your lungs are just a complete terrible mess. People are the tissue of the lung called the interstitial, blood stream. "In my lungs, it got thicker and thicker so that amazed you're getting across the room'," said which supports the structures of the lung. Pulmonary fibrosis causes the lung tissue in every breath I take, it takes longer and is harder Alexander-Carew. "I've had enough of my lungs. They're costing the alveoli (air sacs) to thicken and become stiff. for the oxygen to get transferred to the blood. me nothing but pain and sadness right now. I'm Eventually it's going get so thick that I won't be ready for a new pair. That's my story." able to breathe enough to keep up with the oxyThe indoor cycling fundraiser takes place on gen requirements of my body," said AlexanderJune 15 from 3-9 p.m. at River Oaks Community Carew. "A transplant cures the disease, (but) it Centre, 2400 Sixth Line, in Oakville. Riders can has its own complications." sign up to ride for one or two-hour increments. Alexander-Carew said once you're diagnosed, There are 18 bikes available at each hour time your only hope without a transplant is if you slot. have one of the "really slow moving" diseases. Each rider is asked, but not required, to bring "You can go 10, 15 (or) 20 years with pulmo$100 in sponsorship. nary fibrosis, making slow or no progress. Or you Rotary Club of The event will also offer family-oriented activiget unlucky like me and get the ultra-aggressive Oakville Trafalgar ties, food, yoga classes and sports massages, kind and 11 months later, you've gone from among other activities. nothing to needing a transplant," said AlexanderAll proceeds go to the Canadian Pulmonary June 22-24, 2012 Carew. Fibrosis Foundation. He said one of the biggest problems with Fri. 4-11 pm, Sat. 10 am-11 pm, Sun. Noon-7 pm For more information or to register, e-mail pulmonary fibrosis is misdiagnosis or people Sheridan College Robyn Rourke at cycleofhealth@cogeco.ca. being diagnosed too late. Trafalgar Road Campus FREE ADMISSION SAVE UP TO $2700 ON NEW FURNACE & AIR CONDITIONER $700 OFF HI-EFFICIENCY CENTRAL AIR BIGGEST SALE EVER! WAS $ Ribs, Chicken & more Musical Acts Kid's PlayZone Crafters & Vendors Lots of Parking FREE Shuttle www.oakvillefamilyribfest.com PRICE MATC H GUARANTEE. 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