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

See how this family learns to live with pulmonary hypertension and how they are helping others.


Sabrina Childress

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 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 $1.9 billion not-for-profit health care organization and a community-based network of physician practices, hospitals and care centers throughout Central Florida. Physician Associates, one of the largest multi-specialty practices in central Florida, consisting of more than 90 physicians in more than 20 locations, became a member of the Orlando Health family in January, 2013.

The organization, which includes the area’s only Level One Trauma Centers for adults and pediatrics, is a statutory teaching hospital system that offers both specialty and community hospitals.  They are: Orlando Regional Medical Center; Dr. P. Phillips Hospital; South Seminole Hospital; Health Central Hospital, South Lake Hospital (50 percent affiliation); St. Cloud Regional Medical Center (20 percent affiliation), MD Anderson Cancer Center Orlando – the first affiliate of one of the nation’s premier cancer centers, The University of Texas MD Anderson Cancer Center in Houston; and the Arnold Palmer Medical Center, which consists of Arnold Palmer Hospital for Children and Winnie Palmer Hospital for Women & Babies. Orlando Health’s areas of clinical excellence are heart and vascular, cancer care, neurosciences, surgery, pediatric orthopedics and sports medicine, neonatology, and women’s health. 

Orlando Health is one of Central Florida’s largest employers with nearly 16,000 employees and more than 2,500 affiliated physicians supporting our philosophy of providing high quality care and service that revolves around patients’ needs.  We prove this everyday with over 110,000 inpatient admissions and nearly 690,000 outpatient visits each year.   In all, Orlando Health serves 1.6 million Central Florida residents and nearly 3,000 international patients annually.  Additionally, Orlando Health provides approximately $239 million in support of community health needs.  More information can be found at www.orlandohealth.com.

November 21, 2013, in Health