LISBON — From the time she was 4 years old, Renee Brodeur had a basketball in her hand and pounded her way up and down the hardwood all the way through high school.
But nowadays, just walking across a room often feels insurmountable for the once-active, 25-year-old Lisbon woman. Brodeur was diagnosed in 2008 with Still’s disease, a form of arthritis characterized by high spiking fevers and debilitating pain and rash.
“I went from working full time and being active to not doing much and spending a lot of time in the hospital,” Brodeur, a 2004 Monmouth Academy graduate, said.
Only one in 100,000 people suffer from Still’s disease. Brodeur has an even rarer adult onset version of the juvenile disease. As if facing the rare autoimmune disease wasn’t hard enough, Brodeur was then diagnosed with pulmonary hypertension in 2010.
She is one of just four people in the world with both conditions.
“It’s devastating. You go from being able to wake up everyday, go to work, do what you want to do, make plans for the weekend,” Brodeur said from her hospital room at Maine Medical Center. “And now I can’t even plan for today.”
The diseases have caused high blood pressure in her lungs, dizziness and fainting that is exacerbated by physical exertion. She’s unable to do everyday activities without the aid of oxygen.
A double lung transplant operation is her only hope of leading a normal life, according to her doctors. And while approved for the operation after a lengthy battle with the insurance company, she will still need to cover the costs of medication, lodging and trips to the Cleveland Clinic every three months.
Now on the national transplant list awaiting a pair of lungs, it’s essentially a waiting game for Brodeur and her family. She must be ready within hours if the call comes in from Cleveland that a match has been found.
“It’s really difficult. It’s day to day depending on how she feels,” Brodeur’s mother, Madeleine, said. She gave up her job to care for Renee when she moved home from the Augusta area. “Any mother would do it.”
Brodeur distinctly remembers the night in early January 2008 when symptoms first surfaced. She came home one night from her job at Legal Services for the Elderly in Augusta. She had trouble getting warm, had the chills and went to bed early — only to wake up feeling even worse.
After a couple of weeks, Brodeur went to the hospital, and after weeks of hospital stays and hundreds of tests, she was diagnosed in March 2008 by a rheumatoid arthritis specialist in Portland.
“The first couple months were just trial and error,” Brodeur said of the revolving door of doctors’ appointments and medications — many of which brought side effects as bad as the disease.
She lost 100 pounds in a year due to the side effects of her medication and continued growing weaker and weaker until her mother forced her to go to the emergency room at Maine Medical Center. That’s when doctor’s gave Brodeur even more devastating news — this time about the pulmonary hypertension.
Yet through it all, Brodeur refuses to give in to defeat and continues fighting. Her personal story has inspired friends and family to do the same. And now, a group of them is helping her battle back.
“It’s been inspiring,” said life-long friend Kandace Lord, one of several people helping organize fundraisers for the woman she used to babysit as a girl. “Renee is a really strong person. She’s inspired me to change a lot of things about myself and to become stronger and healthier.”
Lord, Brodeur’s mom and a growing groups of friends trying to help the young woman pay for the double lung transplant have created a website to help her raise money. The group already organized a 5K road race in her honor earlier this month and will host a spaghetti dinner in early June to help raise money toward the costly operation.
The surgery is estimated to cost $657,000, but there are still thousands in additional costs as well.
Checks should be made payable to Northeast Lung Transplant Fund, in honor of Renee Brodeur. Checks can be mailed to NTAF, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087.
Credit card donations can be made by calling 800-642-8399 or going to the fund’s website, www.ntafund.org, and searching for her name or by going to http://tinyurl.com/2fxvelw.
Staff writer Scott Taylor contributed to this story.
If you go
WHAT: Spaghetti supper fundraiser for Renee Brodeur
WHEN: Saturday, June 4, 4 to 7 p.m.
WHERE: Elks Lodge in Brunswick, 172 Park Row
COST: $8 per adult or $20 per family; kids under 5 eat free. All proceeds go to benefit NTAF Northeast Lung Transplant Fund in honor of Renee Brodeur, who needs a double lung transplant.
For more information, contact Kandace Lord at 841-0449 or Madeleine Brodeur at 441-8054.