Teen battles rare condition and copes with art, mother becomes advocate to build awareness

ORLANDO, Fla. (November 20, 2013) – A rare and serious heart disease has changed the lives of one 19-year-old and her family. Three years ago Nicole was diagnosed with pulmonary hypertension — a progressive form of high blood pressure in the arteries of the lungs that impacts the right side of the heart and causes heart failure for thousands each year.

At a time when many teens are eager to get their driver’s licenses Nicole learned she had an incurable disease that would limit her ability to exercise, walk and even get dressed without assistance. At the same time when mothers are usually helping daughters get ready for the school dance, Jane, Nicole’s mom, was assisting her daughter with a special pump to administer medications to keep her daughter’s heart as strong as possible. Over the years Jane has also spent time reading and researching everything she could get her hands on to find out more about this disease she had never heard of before the doctor delivered the news; and becoming a health care advocate for her daughter and pulmonary hypertension – joining related associations and even leading a support group.

Nicole’s pulmonary hypertension is believed to be the result of a congenital heart disease that was detected when she was 15 years old.

Described as shy by her mother, Nicole doesn’t complain about having pulmonary hypertension. Instead, Nicole turns to a creative outlet.

“She doesn’t talk about it much,” said Jane. “I think she expresses her feelings in her artwork.”

The day after Nicole was diagnosed with pulmonary hypertension, she drew a picture of a young girl sitting with her knees to her chin, and a tear drop streaming down her cheek. Other pictures include the same character with an oxygen machine – resembling the one prescribed by doctors to help manage the disease.

Today Nicole is in college studying art, with plans of using her creative talent to illustrate storybooks, and through other venues.

“You can always go on with your life,” said Nicole. “You just have to adapt to your circumstances.”

Nicole is a patient in the Pulmonary Hypertension program at the Orlando Health Heart & Vascular Institute. Her medical team, led by James Tarver, MD, cardiologist and director of the program, has spent the past couple of years evaluating and treating Nicole for pulmonary hypertension using various treatment options, while also working in collaboration with the physician who manages her congenital heart disease.

Because pulmonary hypertension is not curable at this time, and in Nicole’s case medications and other therapies have kept her heart stable without continued improvement, doctors have recommended a heart lung transplant.

“Before 1995, there were not treatments for pulmonary hypertension,” said Dr. Tarver. We are fortunate that the field has advanced so rapidly that Nicole now has multiple medical treatment options that will help bridge her to transplant.”

###

About Pulmonary Hypertension

• Pulmonary Hypertension is a rare but serious illness. Pulmonary hypertension occurs when the small arteries (blood vessels) of the lungs become narrowed and can't carry as much blood, resulting in pressure buildup in the heart.
• In a healthy heart, the right side of the heart pumps blood through the lungs, where it picks up oxygen and is returned to the left side of the heart where it is pumped to the whole body.
• Over time, if left untreated, the right side of the heart becomes enlarged and will eventually fail. There are several causes-some unknown-and several treatments available, and it often takes a combination of medications to manage the symptoms.
• Pulmonary Hypertension affects about 300 new patients in the United States each year.
• Treatment options for pulmonary hypertension include oral, inhaled and infused medications and therapies.

About Orlando Health

Orlando Health is a $3.4 billion not-for-profit healthcare organization with more than 2,400 beds serving Central Florida and beyond. Consisting of eight wholly-owned or affiliated hospitals and rehabilitation centers, Orlando Health has the area’s only Level One Trauma Centers for adults and pediatrics, and is a statutory teaching hospital system that offers both specialty and community hospitals. They are: Orlando Health Orlando Regional Medical Center (ORMC); Orlando Health Arnold Palmer Hospital for Children; Orlando Health Winnie Palmer Hospital for Women & Babies; Orlando Health UF Health Cancer Center; Orlando Health Dr. P. Phillips Hospital; Orlando Health – Health Central Hospital; Orlando Health South Seminole Hospital; Orlando Health South Lake Hospital; affiliate, St. Cloud Regional Medical Center.

The organization includes Orlando Health Medical Group and Orlando Health Physician Associates, two of the region’s largest multi-specialty practices; a renowned cancer center – Orlando Health UF Health Cancer Center (with free-standing sites in downtown Orlando, the Dr. Phillips community in southwest Orlando, Lake Mary, Ocoee and Clermont); four outpatient surgery centers; 10 wholly-owned, affiliated or partnership urgent care centers; and a majority interest inan entity operating five outpatient imaging centers.

More than 2,900 physicians have privileges across the Orlando Health system, which is also one of the area’s largest employers with more than 20,000 employees who support our philosophy of providing high-quality care and service that revolves around patients’ needs. Orlando Health proves this everyday with more than 112,000 inpatient admissions, more than 2.4 million outpatient visits and more than 10,000 international patients each year. Additionally, Orlando Health provides more than $450 million in total value to the community in the form of charity care, community benefit programs and services, community building activities and more.