Living with PH

Living with PH

Browse this section to learn about coping, managing diet and nutrition, exercising and day-to-day living with PH.

Coping

Living Well with Lung Disease – Part 1

Kristen Holm, PhD

A PH diagnosis affects patients as well as their family members and those around them. Join PHA Classroom and Kristen Holm, PhD, for a discussion of the ways that lung disease affects patients and families. Coping skills, social support and emotional well-being for all affected by PH are discussed.

Living Well with Lung Disease – Part 2

Kristen Holm, PhD

What types of things would a palliative care physician talk to me about?

Hilary M. DuBrock, MD

Who can benefit from palliative care, and should I ask my doctor about it?

Hilary M. DuBrock, MD

I’ve heard that palliative care is the same thing as hospice care/end of life care. Are they the same thing?

Hilary M. DuBrock, MD

What is palliative care? How is it connected to quality of life?

Hilary M. DuBrock, MD

Coping with Chronic Illness

Bela Patel, MD
Ben Lippe, PhD
Landra Slaughter, RN, CCRC
Aaron Waxman, MD, PhD, FACP, FCCP

This session focused on coping with chronic illness over the long term for caregivers and patients. Caregivers can be family members, friends or health care professionals. Long-term exposure to the challenges and stress of providing care and/or living with a chronic illness can lead to physical and emotional symptoms. Caregivers and patients may experience difficulty coping, compassion fatigue, burnout and survivor’s guilt. Strategies to identify and address these issues will be discussed.

Coping with PH and the Role of Palliative Care

Tim Williamson, MD
Timothy Lahm, MD
Traci Stewart, RN, MSN, CHFN

Day-to-day life with chronic disease is a challenge to patients, caregivers and their families. The goal of this session is to provide tools for coping with the “good days” as well as the “bad days,” and provide some new options for improving quality of life.

Finding and Living Your New Normal

Natalie Kitterman, BSN, RN, CCRP

This webinar is especially designed for newly diagnosed pulmonary hypertension (PH) patients. Natalie Kitterman, BSN, RN, CCRP, reviews the basics of what every PH patient should know about treatment and coping with this disease. The presentation answers common questions newly diagnosed patients may have such as, “Why am I different?,” “Where do I go from here?,” “How do I help myself and my loved ones?,” and more. The end of the hour features an open Question and Answer session.

Holiday Headspace

In this PHA Classroom video, experts David D. Barnum PhD, a clinical psychologist with a specialization in health psychology, and Patrick Mellin, a PAH patient and support group leader, discuss how holiday expectations can cause added stress and increased anxiety as well as ways to recognize stressors and address them with coping mechanisms. They also share information on identifying mental health concerns and where to get professional assistance and peer support. The video offers valuable firsthand experience from Mellin, who addresses ways that he approaches the added stress and expectations during the holidays and through the winter.

Holiday Headspace Caregiver Edition

This PHA Classroom video explores the concerns of caregivers surrounding added expectations during the holiday season. Michele Freeman, MS, NCC, LPC, a pulmonary hypertension (PH) caregiver and professionally licensed clinician, provides valuable insights and information for caregivers to address the challenges they face while providing support, while also focusing on their own needs. She shares her expertise, including ways to identify stressors, coping strategies and how caregivers can find peer support through the Pulmonary Hypertension Association (PHA).

Everyday Living

PH, Intimacy and Self-Image: A Woman’s Journey

Ioana R. Preston, M.D. addresses personal issues that affect female patients with PH and identifies creative ways for patients with physical or functional limitations to have meaningful intimate relationships. The presentation provides strategies to help women feel more comfortable with their bodies, improve self-image, enhance intimate relationships, and feel more comfortable in sexual experiences.

Over-the-Counter Medications and Side Effects Management

Martha Kingman, D.N.P., FNP-C, and Jessica Humphrey, Pharm.D., BCPS, discuss the classifications of medications used to treat pulmonary hypertension (PH) and their side effects, interactions between common over-the-counter (OTC) medications and PH medications, and identifying the differences between cold, flu, allergy and COVID-19 symptoms in this webinar.

My Life With PH and Advice To Others Newly Diagnosed

Nicole Reid, B.S.N., R.N.

Health care planning: Conversations, decisions and directives

Charles Sabatino

Learn the essentials of health care planning, advance directives, and the three key questions at the heart of health decisions planning with Charles Sabatino, Director, American Bar Association’s Commission on Law and Aging. Recognize five myths of advance care planning that get in the way and discover the free resources that help you and your family get the process going. Being prepared with needed documents for any health emergency ensures that you will have a trusted person of your choice empowered to make health decisions for you if you are unable. It is not rocket science, but it takes a little initiative, and it is essential for all adults age 18 to 118.

Newly Diagnosed: Beyond Diagnosis: Working and traveling with PH

Leslie Polss
Nicole Reid

Learning to adapt to a new normal can be difficult, but there is life beyond your PH diagnosis. In this patient-led webinar, panelists discuss the challenges of navigating work and travel with PH. Panelists offer insights, tips, and strategies they’ve learned from personal experience traveling and working after a PH diagnosis. Being able to prepare for interviews, handle work schedules, and arrange for travel are new hurdles for newly diagnosed PH patients. But they can be managed with preparedness skills and the inside scoop!

Men with PH: Specific Issues for Men Diagnosed with PH

Jeff T. Voner, MSHS, MPH, PA-C

During this webinar, Mr. Voner presented a patient story to highlight the unique ways men can experience diagnosis and living with PH. Audience members will learn how PH and the different treatment options can affect them physically and will also come away with a better understanding of how PH may impact others facets of their lives. Finally, strategies will be presented to help men with PH learn to adapt to these physical, mental and social challenges.

Men with PH

Robert Schilz, DO, PhD
Christopher Barnett, MD, MPH
Jeff Voner, PA-C

During this session, panelists will facilitate a discussion about the ways that men experience living with PH, and the ways that PH can impact one’s personal life.

Women’s Reproductive Health and PH

Wendy Hill, FNP-C
Patricia Santiago-Munoz, MD
Corey Ventetuolo, MD, MSCI
Melisa Wilson, ARNP, ACNP-BC

The goal of this session is to discuss the importance of reproductive health issues in PH, including recommendations for pregnancy prevention, routine well-woman exams, gynecological procedures, etc. This session will also share information about various methods of birth control that are available to women with PH.

Exercise

Introduction to Exercise

Daniel Lachant, D.O.
Jim White, M.D., Ph.D.

The Introduction to Exercise video offers information from experts Daniel Lachant, D.O., and Jim White, M.D., Ph.D., on pulmonary hypertension (PH) and how the heart, lungs and muscles can benefit from exercise.

Introduction to Pulmonary Rehabilitation

Lindsay McAvoy, R.R.T.

The Introduction to Pulmonary Rehabilitation video, presented by Lindsay McAvoy, R.R.T., provides an overview of pulmonary rehabilitation exercises. It also presents questions to ask pulmonary hypertension (PH) doctors.

Introduction to Yoga

Caroline M. Quill, M.D.
Sammy M. Jones Jr.
Mychea Morehouse

The Introduction to Yoga video gives an overview of a yoga practice designed to improve flexibility, balance, strength and focus. The video features Caroline M. Quill, M.D., Sammy M. Jones Jr. and Mychea Morehouse and includes questions people with pulmonary hypertension (PH) can ask their PH doctors.

Introduction to Cardio

Lindsay McAvoy, R.R.T.
Kerri Claffey
Elizabeth Quetchenbach

Lindsay McAvoy, R.R.T., Kerri Claffey and Elizabeth Quetchenbach give an overview of cardio workouts. The Introduction to Cardio video also presents a sample cardio routine and questions people with pulmonary hypertension (PH) should ask their PH doctors before beginning an exercise program.

Introduction to Strength Training

Mary Beth Brown, P.T., Ph.D.
Patrick B. O’Connor
Jhenna Pacelli

This instructional video provides examples of exercises that target major muscle groups that can be completed at home, in a gym or as part of a rehabilitation program. Targeted for people with pulmonary hypertension (PH), the Introduction to Strength Training video is presented by Mary Beth Brown, P.T., Ph.D., Patrick B. O’Connor and Jhenna Pacelli.

Exercising with PH: The Ins, Outs, Ups and Downs

Julie Tracy, MSc
Abbey Karin, M.Ed.

Starting an exercise program with a diagnosis of PH can often be a scary thought. Exercise is a great way to improve breathing efficiency, aerobic capacity, and overall quality of life. These factors play a major role in improving symptoms that are associated with PH. During this webinar, senior exercise physiologists: Julie Tracy, MSc and Abbey Karin, M.Ed. of Brigham and Women’s Hospital discussed the benefits of exercise, risks and warning signs to be aware of when exercising, and daily exercises that can increase your fitness and strength.

Diet and Nutrition

Managing sodium and fluids in PH

Mary Whittenhall, M.S.N., APRN, AGPCNP-BC
Nicole Reid, R.N., B.S.N.

Panelists discuss the effects of dietary salt, excess calories and fluid intake on the body, as well as why PH patients require greater awareness to these components of their diet. Discussion also emphasizes dietary and lifestyle strategies that patients may use to ensure long-term success in achieving their goals for sodium and fluid management.

Holiday Strategies: Pumpkin spice, everything nice and low sodium

Katherine Beich, MS, RDN, LD

In this holiday special, Katherine Beich, M.S., R.D., Baylor University Medical Center, discusses healthy sodium guidelines and strategies. By walking through a few low sodium recipes, we explore sodium management and portion control guidelines to keep in mind when making choices throughout the holidays. The webinar also discusses potluck and party strategies to maintaining a balanced sodium intake.