LISBON, Maine — Looking back at her high school years — which weren’t so long ago — Renee Brodeur remembers playing sports, from basketball to tennis, “everything.”
An honor roll student who led an active life, “I was big into sports,” said Brodeur.
Race up and down a soccer field? No sweat.
Play another set on the tennis court? Take a deep breath and serve.
That’s all changed.
Now 25, Brodeur perched in an arm chair in her parents’ Lisbon living room recently, speaking in a soft voice about how much different her life is today. Not only is she battling a rare autoimmune disease with debilitating symptoms and no cure, she’s also been diagnosed with pulmonary hypertension — one of four people in the world with both conditions. And when feeling well enough, she spends hours on the phone arguing over medical bills and insurance denials.
Doctors can tell her what she needs to make her feel better: a double-lung transplant. But because her condition doesn’t rank among the medical community’s most critical needs, they can’t tell her when she might be able to undergo the procedure and how she might pay for it.
So she waits at home, focusing her energy on staving off mounting pain and frustration.
A normal life changes
Brodeur went to elementary school in Richmond before graduating from Monmouth Academy. She began working at Legal Services for the Elderly in 2006 in Augusta, helping guide elderly people through the Maine Prescription Drug program, which at the time was new and confusing for people. Her plan was to continue working while going back to school to further her education.
But her life changed on Jan. 7, 2008, a day “I will never forget,” Brodeur said. She came home from work and turned on the TV news, “and I could not get warm.” She experienced chills, and “there was nothing that I could do,” to make it stop.
The strange symptoms continued for days but she chose not to go to the hospital. She had a sore throat, a rash, headaches, a fever and muscle and joint pain.
“There were times the pain was so crippling I couldn’t move,” Brodeur said. But after her fever spiked to almost 104 degrees, her mother, Madeleine, took her to MaineGeneral Hospital, where she was admitted.
Brodeur describes that hospital stay as a blur. A medical team performed a series of tests ranging from a spinal tap to CT (computerized tomography,) scans but they couldn’t diagnose her ailment. She was released after a couple weeks, but returned after the symptoms recurred about 10 days later.
In March 2008, she met with Dr. Marc Miller of Rheumatology Associates in Portland, and he diagnosed her with Still’s Disease. The symptoms and her elevated white blood cell count prompted Miller to diagnose her condition as the rare disease.
The first treatment was steroids, a “very ugly drug,” Brodeur said. A period of trial and error as doctors sought appropriate medications to treat her condition subjected her to negative side effects.
Because Still’s Disease is so rare, there isn’t a lot of medical history upon which to base treatment. She was on one drug that seemed to work, and in November 2008, doctors also prescribed Kineret, which has to be self-injected daily into a fatty part of the body.
As she struggled to overcome seemingly chronic ill health, her employer set her up with disability that summer. Meanwhile, some days were good and some bad living with Still’s Disease symptoms.
In May 2009, Brodeur became very sick. Living with her parents in Lisbon at the time, she couldn’t keep down food, was vomiting constantly and displaying concentrated Still’s Disease symptoms. Her father, Gaetan, rushed her to Central Maine Medical Center in Lewiston where doctors tried to determine if it was Still’s Disease or an infection that made her sick.
Her heart rate was racing and she couldn’t take her Kineret, effectively “releasing the power of Still’s Disease.” During the three next weeks, she experienced paralyzing pain, especially in the area of her gall bladder, which had swollen. After four hours of abdominal scans, doctors removed Brodeur’s gall bladder.
Brodeur bounced in and out of hospitals the remainder of 2009 and 2010. In September 2009, she went to Maine Medical Center in Portland for treatment of an adverse reaction to a medicine. There, she had to endure a Peripherally Inserted Central Catheter (“PICC line”) inserted into patients who have a lot of blood drawn.
Given that Still’s Disease is so rare with an occurrence of about 1 in 100,000 people, “Everyone kept telling me to play the Megabucks,” Brodeur said. Remembering her hospital stays, “I never went through that process of, ‘Oh my God, am I going to die?’ My mind never went there.”
“I had my family,” Brodeur said. “I had friends who came to see me, I had a lot of support.”
At this point, Brodeur weighed 250 pounds, her heaviest weight, which contributed to her health problems. From 2009 to 2010, she’d lose 100 pounds due to the side effects of the drugs. But from 2009 to spring of 2010, “even going up the stairs or doing anything, I was exhausted. I couldn’t breathe.”
She’d get dizzy and have to sit down, but attributed this to being out of shape because, “like I said, I was stubborn, I ignored it and didn’t say anything to my doctors.”
Finally one night, Brodeur said her mother, who was frustrated at this point, dragged her back to the Emergency Room at Maine Medical Center
The ER doctor instructed Brodeur to do a six-minute walk for a vitals check. Her oxygen dropped dramatically and her pulse rate shot up. She was admitted to the intensive care unit and hooked to machines constantly throughout a five-week hospitalization during which she learned her heart was on the brink of failure.
A procedure that measures the pressure of her heart pumping blood determined she has pulmonary hypertension (PH), which according to the Pulmonary Hypertension Association is high blood pressure in the arteries of the lungs that can lead to heart failure.
“I was pretty devastated to know that I had something else to deal with, that came out of nowhere,” Brodeur said. “My family doesn’t have any history … This could happen to anybody anytime.”
Doctors concluded the PH was brought on by arthritis caused by her Still’s Disease. She left the hospital with an aggressive drug called Flolan to reduce the heightened pressure in her lungs. It’s difficult to mix and the side effects “are awful,” including migraines, vomiting, diarrhea, jaw pain and tingling all over her face.
But there was no other drug she could take. She has a form of PH called Pulmonary Vascular Occlusive Disease (PVOD) and Flolan helps keep her blood vessels open and her heart pumping blood.
At the end of September, she went back to Maine Medical Center. The concentration of Flolan wasn’t working, so the blood pressure in her lungs had spiked. She was flown to the Cleveland Clinic in Ohio, where she underwent another series of painful procedures.
She was released in October, but rushed back to Cleveland by jet in November with severe chest pain. Doctors feared she had another blood clot in her lungs, and they told her she needs a double-lung transplant.
She left Cleveland Clinic the second time on Dec. 6, driving back to Maine with her mom. She had two short hospitalizations that month but has been out since Christmas Eve.
Brodeur couldn’t work after June 2010 but was still employed and receiving disability benefits in December. Her insurance provider had approved the double-lung transplant, travel and lodging coverage. But her employer had to switch insurance providers and she lost the transplant coverage as of January.
Her specialists have had to fight for coverage of her medications — three alone cost a total $12,600 per month. She’s also fighting a $42,000 bill for a jet flight to Cleveland.
Despite feeling sick most mornings, Brodeur tries to go out when she can, but it’s a struggle. She also tries to maintain a positive perspective.
“I’m lucky to be here,” she said. “I’m lucky to be getting the help that I’m getting.”
From her family — parents, older sister and brother-in-law — to her employer and doctors, “everybody who has touched my life has played a vital role in my surviving.”
Friends from Richmond she last saw while in fifth grade have reached out to raise money for her transplant and strangers across the country have donated. Brodeur’s father, Gaetan, said the family has seen the best and worst side of human nature.
Brodeur remains on a national transplant list “waiting for the big call,” at which time she and her family will fly to Cleveland. In the meantime, she sees a doctor in Cleveland every few months and keeps in touch with a transplant coordinator.
The new lungs will eliminate the side effects of the PH drugs, and she should be able to breathe easier right away.
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According to the International Still’s Disease Foundation, Still’s Disease is a form of arthritis characterized by high spiking fevers and salmon-colored rash, swelling lymph glands, enlarged spleen and liver and sore throat — sometimes accompanied by inflammation of the lungs and around the heart. It occurs most commonly in children but does appear in adults. It affects 25,000 to 50,000 children in the United States, but is rare in adults, usually affecting 20- to 35-year-olds. The cause is unknown and there is no known cure, but the disease is treatable and research is ongoing. Source: www.stillsdisease.org.
According to the Mayo Clinic, pulmonary hypertension is a type of high blood pressure affecting the arteries in the lungs and the right side of the heart. Tiny arteries in the lungs and capillaries become narrowed, blocked or destroyed; making it harder for blood to flow through the lungs and raising pressure within the arteries of the lungs.
As the pressure builds, the heart’s lower right chamber (right ventricle) must work harder to pump blood through the lungs, eventually causing the heart muscle to weaken and eventually fail completely. There is no cure for pulmonary hypertension but it is treatable.
Symptoms include shortness of breath, fatigue, dizziness or fainting spells, chest pressure or pain, swelling in ankles, legs and eventually abdomen, bluish color to lips and skin, and racing pulse or heart palpitations.
For information, visit www.mayoclinic.com/health/pulmonary-hypertension/DS00430