Sitting by the pool with her three grandsons, 60-year-old Barbara Mare marvels as she draws in several deep breaths and inflates a swimming tube for them with ease.
“Just three years ago, I couldn’t do this,” she said. “I can’t believe how far I’ve come!”
On 8/8/08 – what many called a lucky day – Barbara was diagnosed with Pulmonary Hypertension (PH) – a type of high blood pressure that specifically affects the flow of blood in the lungs. And while at face value, the day may not appear to have brought good fortune to Barbara, she has a completely different outlook.
“It was my lucky day,” she said. “I finally had a diagnosis and could work with a team of specialists to help me manage my disease.”
For over 25 years, Barbara has suffered from a combination of autoimmune diseases that have caused her to experience a variety of symptoms including cold hands and fatigue. A perioperative registered nurse who once worked in Winthrop’s Operating Room, Barbara was well attuned to any symptoms that seemed out of the ordinary. So when she began experiencing chest palpitations and couldn’t walk from the parking lot to the elevator at work without feeling short of breath, she immediately made an appointment with her physician.
Several visits and CT scans left her with no definitive diagnosis, while Barbara’s symptoms continued to worsen. That’s when she turned to a dedicated team of specialists at Winthrop-University Hospital for help.
“Having worked at Winthrop in the past, I had tremendous confidence in the level of care that I’d receive as a patient,” she said.
A battery of tests – including an echocardiogram, pulmonary function test and right heart catheterization – one of the most accurate and useful tests for PH – were promptly administered, and soon a diagnosis of PH was confirmed by cardiologist Frederick Fein, MD, Director of the Telemetry Service at Winthrop. Recognizing the importance of being treated at a multidisciplinary PH Center that provides comprehensive care to patients, Barbara was happy to learn that such a Center was literally at her fingertips at Winthrop.
Some patients with pulmonary problems are referred to Winthrop’s Pulmonary Rehabilitation Program – a comprehensive program that provides education, exercise, group support and a home-maintenance regimen to patients with breathing disorders including PH, emphysema and COPD. The program is staffed by a team of registered nurses, respiratory therapists, physical therapists, psychologists, pharmacists and social workers who are committed to meeting the unique needs of each patient.
Patients at Winthrop’s Pulmonary Hypertension Center receive personalized and attentive care from Shilpa DeSouza, MD, Medical Director of the Pulmonary Hypertension Center, and the Center’s full-time nurse practitioner, Mary Bartlett, who work together with patients to develop a care plan to best manage their disease. What’s more, patients at Winthrop’s Pulmonary Hypertension Center are presented with opportunities to participate in the latest clinical research studies, through which they may take advantage of new and emerging therapies.
“Pulmonary hypertension is a very complex disease,” said Dr. DeSouza, who underwent extensive training with internationally renowned PH specialists to become an expert on the disease and the latest treatments, research and clinical trials.
Pulmonary hypertension (PH) is frequently misdiagnosed or diagnosed after it has progressed to a late stage.
Since first being diagnosed with PH, Barbara has worked with the Center’s team to establish the best treatment regimen to improve her quality of life. She’s tried a few different therapies – including Flolan, a continuous intravenous drip therapy considered the “gold standard” in cases of severe PH – all with good results. But recently, when a new inhaled therapy called Tyvaso® came onto the market, Barbara was eager to try it. She worked with the Center’s team to transition off Flolan and onto a combination therapy that includes Tyvaso, and today she couldn’t be happier with the results.
Symptoms of PH may include:
• Shortness of breath
• Chest pain
“This new treatment is amazing!” she said. “Every day, I’m feeling stronger and more energetic.”
The professionals at Winthrop’s PH Center recognize the importance of having an avenue through which people affected by the disease can cope. With that in mind, they collaborate with the Pulmonary Hypertension Association (PHA) to offer a free support group open to all PH patients and their caregivers. Led by Dr. DeSouza and Joanne Schmidt, an active member of the PHA who established the PH support group at Winthrop several years ago, the group offers a lifetime of learning, support, hope and empowerment. What’s more, the Winthrop PH Center has collaborated with the PHA on various fundraising events over the years. As a result of these efforts, over $300,000 has been raised for PH research.
Barbara joined the support group when she was first diagnosed and has found it to be a vital resource. In fact, she was recently invited by the President of the PHA to serve on a newly created committee that is dedicated to educating the medical community on the early signs and symptoms of PH with the hopes of achieving better patient outcomes.
Winthrop’s Pulmonary Hypertension Center, in collaboration with the Pulmonary Hypertension Association, organized the “7th Annual New York Fun Walk for PH” on December 10, 2011 at Nassau Coliseum. The walk brought together adults, children and teenagers who have been impacted by pulmonary hypertension and raised more than $70,000 for research on this life-threatening illness that causes progressive breathlessness.
Today, as Barbara looks back at her journey with PH, she is thankful for the constant care and guidance of Winthrop’s Pulmonary Hypertension Center.
“I was moved by the strength and determination of our PH patients and their efforts to make a difference. I am truly proud to be a part of this community,” said Dr. DeSouza.
“I understand just how important it is to follow doctor’s orders,” said Barbara. “Winthrop’s Pulmonary Hypertension Center has always been there to help but ultimately, it was up to me to help myself. I’m so proud of the success we’ve achieved together.”
Vol. 22, No. 1
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