Living Longer, Living Better: How Specialized Pulmonary Arterial Hypertension Care Helped Nellie Reclaim Her Life

For more than 20 years, Nellie Legendre’s concerning symptoms—fainting frequently, struggling to walk short distances, and often feeling breathless—puzzled doctors. When she was finally diagnosed with pulmonary arterial hypertension, Nellie was told she might have just six months to live. But more than a decade later, Nellie is thriving and sharing her story to raise awareness of this commonly misdiagnosed condition.

Pulmonary arterial hypertension (PH) is a form of high blood pressure that affects the arteries in the lungs. It occurs when the small pulmonary arteries become narrowed or blocked, making it more difficult for blood to flow through them. The most common symptoms include shortness of breath, fatigue, chest pain, and swelling in the feet, all of which are also seen in other cardiorespiratory conditions.

After Nellie’s husband passed away, she became more concerned about her symptoms. The fear of passing out when she was alone—walking down the driveway to get her mail or while grocery shopping—was the most worrisome.

A Long Road to Diagnosis

“Every doctor I saw made the connection to high blood pressure and put me on medications for that, but I was still passing out and losing my breath,” Nellie explained. “I was in the middle of another stress test for my heart when a technician connected the dots and sent me to a specialist who told me about PH.”

Because her diagnosis came after years of symptoms, Nellie's PH was advanced and required aggressive treatment. At that time, her best option was IV therapy, where medication is delivered continuously from a small pump connected to the body via a catheter. Nellie quickly learned how to manage her treatment, which involved mixing the drug and refilling the pump daily, but her body didn’t tolerate the drug well.

“I had hives, was nauseous, and my jaw would hurt when I ate,” Nellie said. “I should have said something to my doctor sooner, but my mind was overwhelmed between losing my husband and being diagnosed just three months later. When I finally told my doctor, they changed my medication, and I felt better almost immediately.”

Uncovering a Hereditary Link

After her diagnosis, Nellie and her family began piecing together a troubling pattern. Her brother died at 55, a niece at 35 and another at 22—all had been diagnosed with a heart or lung condition.

“It’s more common for hereditary PH to be diagnosed in patients in their 30s and 40s who have recently begun experiencing fatigue or breathlessness, but we’ve learned a great deal about PH in the last 20 years, which is leading to more older patients like Nellie finally getting diagnosed,” explained Hai Tran, MD, a pulmonologist with the Comprehensive Pulmonary Hypertension Center at University Medical Center New Orleans. “If a patient has PH symptoms and has more than one family member who was diagnosed at a young age with a heart condition or died unexpectedly, we start asking more specific questions about a possible hereditary link.”

Following Nellie’s diagnosis, many of her family members talked to their doctors about PH and now undergo annual screenings – a proactive approach that Dr. Tran supports.

“The first year of PH treatment is crucial,” Dr. Tran said. “We’ve seen that the more effective treatment is in that first year of diagnosis, the better the long-term outcomes will be. We used to see one-to-three-year mortality rates, but now we have PH patients who are living full lives more than a decade after diagnosis. We can not only help patients live longer, but also have a better quality of life the sooner they are diagnosed.”

A New Chapter of Care

After years of care at another institution, Nellie switched her care to the Comprehensive Pulmonary Hypertension Center (CPHC) at University Medical Center in January 2025.

“I was no longer pleased with the care I was receiving, and I knew that I had to make a change – this is my one body, I won’t get another one,” Nellie said. “I’ve been so pleased with the care at CPHC and with Dr. Tran. They are much more knowledgeable about PH, so I’m receiving better overall care and that gives me peace of mind.”

The CPHC was recently reaccredited by the Pulmonary Hypertension Association, receiving the association’s highest level of comprehensive care recognition, which confirms the team’s expertise and ability to effectively support patients with PH and related diseases.

“I only see PH patients in my clinic, so I’m able to stay at the forefront of PH advancements, guidelines, and recommendations,” Dr. Tran said. “Just last year, new guidelines were released, and, within the month, I had studied the update, evaluated how I needed to modernize the care we were providing at University Medical Center, and gave a lecture to our fellows and faculty about the new guidelines. A physician who doesn’t specialize in PH may not be as aware of or fully understand the advancements compared to a dedicated PH specialist, who is expected to stay updated on every new finding, treatment options being studied, and guideline changes to optimize patient care.”

Beyond Survival

Today, Nellie and her IV pump, affectionately known as her “little buddy,” travel across the country.

“I have pouches for my pump in different colors so that I can coordinate it with my outfit,” Nellie said. “No one can tell that it’s medication, so I just pack up my ‘little buddy,’ and we go places! My sister and I have been to Las Vegas twice, I’ve been to Disney several times, and my niece and I are planning a trip to Washington, D.C.”

If Nellie ever decides to part ways with her “little buddy” and switch to a non-IV treatment, Dr. Tran says today’s advances in care could make that possible.

“What’s unique about the PH care we provide is how highly personalized it is,” Dr. Tran explained. “No two patients are alike, so we’re able to customize treatment to their preferences, whether they are more comfortable with pills, injections, inhalers, or a combination. PH care isn’t one-size-fits-all — we make decisions together with our patients, not for them.”

Both Dr. Tran and Nellie offer encouragement to those who are experiencing PH symptoms or are newly diagnosed.

“I’ve seen so many patients who were told they wouldn’t qualify for PH-specific therapy and that it wouldn’t help them,” Dr. Tran said. “But then, we evaluate them in clinic, find they would qualify or be a good candidate, customize a treatment plan for them, and they start feeling better. It is possible to get your quality of life back, so don’t let the fear of being diagnosed or starting treatment stop you from pushing forward. Let us help you and be there with you every step of the way.”

“I fought for answers for 20 years, and I’m so glad I did,” Nellie said. “See multiple doctors or go straight to the CPHC if you need to—just keep going until you get answers. Life may be different after being diagnosed or starting treatment, but my story is proof that you can still live a wonderful life with PH.”

If you or a loved one has been diagnosed with PH or suspect you may have the condition, don’t wait to seek care. Early intervention can significantly improve your quality of life. Accredited centers like the Comprehensive Pulmonary Hypertension Center at University Medical Center offer expert care, advanced treatments, and a collaborative team dedicated to improving patient outcomes and quality of life. Click here to learn more, and schedule an appointment today.