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Session Descriptions

On the Road On the Road Speaker On the Road Speaker

General Session #1:
Official opening and welcome
9 – 10 a.m. Grand Ballroom

PH 101 – My PH is not the same as your PH:
Understanding how types of PH differ
Presenter: Ricardo Restrepo, M.D.
Q & A Panelist: Mark J. Rumbak, M.D.

PH describes a process of elevated blood pressure in the pulmonary arteries that can be caused by many different diseases and exposures that are not completely understood. There are different types of PH, and understanding how these types differ — and what diagnostic tools and algorithms are used in diagnosing PH — are essential to understanding the best treatment options for you. Learning about your type of PH can aid in the quality of your care and what to expect. Join us as we provide an overview of the diagnostic process; the similarities and differences in PH signs; common symptoms of PH; and testing procedures.

Break
10:00 – 10:10 a.m.

Support Group Sessions (concurrent)
10:10 – 11 a.m.

Caregivers: Support group for people who love someone with PH (Caregivers only, please.)
Grand Salons I-J
Are you a caregiver or a loved one of someone with PH? Meet with other caregivers to discuss coping tips and to share your experience in a confidential, supportive environment. This session is facilitated by a trained PHA caregiver volunteer and is for caregivers only.

Living with PH: Support group for PH patients of more than three years (Patients only, please.)
Grand Salons G-H
Meet other patients who were diagnosed with PH more than three years ago. Discuss long-term coping tips and share stories of your “new normal” in a confidential, supportive environment. This session is facilitated by a trained PHA patient volunteer and is for patients only.

Men and PH: Support group for men living with PH
Grand Salons A-B
Are you a man living with PH or caring for someone with PH? If so, come meet other men going through the same thing and discuss your experiences in a confidential, supportive environment. This session is facilitated by a trained PHA volunteer and is for men living with PH or men who are caregivers of someone with PH.

Newly diagnosed: Support group for PH patients of less than three years (Patients only, please.)
Grand Salons C-D
If you been recently diagnosed with PH or have been living with PH for less than three years, this is the place for you to meet other patients who, just like you, are beginning their journey with PH. Discuss coping tips and share your experiences in a confidential, supportive environment. This session is facilitated by a trained PHA patient volunteer and is for patients only.

Coffee Break
11– 11:30 a.m. Grand Ballroom Foyer

Medically-Led Breakout Sessions #1
(concurrent)
11:30 a.m. – 12:20 p.m.

Managing your diuretics and fluids with PH: Healthy diet and lifestyle choices
Grand Salons C-D
Panelists: Barbara T. Prendes, ARNP-BC; Chris Zawisza RD, LD/N, CDE

It is critically important for PH patients to take an active role in managing their nutrition and fluid intake. A well-balanced diet, with special attention paid to salt and fluid restriction, is essential to maintaining health and improving well-being with PH. In this session, we will begin by discussing the effects of dietary salt, excess calories and fluid intake on the body and why PH patients require greater awareness of these components of their diet. We will then review common dietary pitfalls, foods that are high in sodium, how to limit fluid intake and potential alternatives for healthy eating. Throughout our discussion, we will provide dietary and lifestyle strategies that patients may use to ensure long-term success.

Managing colds and flu with PH: What should I do when I am sick, and what over-the-counter meds are safe?
Grand Salons G-H
Panelists: Rebecca Anderson, PharmD, BCPS, BCCCP; Melisa Wilson, ARNP, ACNP-BC

Treating a cold, the flu or minor injuries can be challenging when you have PH. This session will discuss and provide recommendations on how to manage minor illnesses, as well as considerations for choosing over-the-counter (OTC) medications. We will help you understand medication interactions and why some medications may or may not be right for you. Additionally, we will review ways to reduce your risk of catching a cold or the flu.

PH therapies and choices: How do you and your clinician choose what’s right for you?
Grand Salons A-B (Session offered again at 12:35 p.m.)
Panelists: Angela Mann, ARNP, NP-C; Mark J. Rumbak, M.D.

This session will provide information on the medication options that are available to PH patients as well as how medications are chosen based on the different WHO group classifications; medical and social considerations; and functional class. Learn more about how health care professionals monitor effectiveness of therapies chosen and how decisions to alter or advance therapies are made. Patient preferences and possible limitations in the selection of therapies ordered for PH patients will also be discussed.

Surgical options: Lung transplantation and PTE surgery for CTEPH
Grand Salons I-J
Panelists: R. Duane Davis M.D., MBA; Kapil Patel, M.D.

This session will focus on the critical importance of appropriate diagnosis of PH caused by blood clots to the blood vessels of the lungs, also known as chronic thromboembolic pulmonary hypertension or CTEPH. Many patients with CTEPH can either have their PH eliminated or markedly improved through pulmonary artery thromboendarterectomy (PTE) surgery. However, PH can continue in some patients after the PTE surgery. In those patients with either persistent or recurrent PH with ongoing symptoms, lung transplantation may be indicated. Outcomes after lung transplant have improved substantially over the years. Learn more about how physicians diagnose CTEPH and how they treat it when there is an appropriate surgical option available.

Break
12:20 – 12:35 p.m.

Medically-Led Breakout Sessions #2
(concurrent)
12:35 – 1:25 p.m.

The important benefits of exercise and rehabilitation programs in PH
Grand Salons G-H
Panelists: Jennifer Keane, CRT, AE-C, TTS; Ricardo Restrepo, M.D.

Attend this session to learn more about home exercise and qualifications for pulmonary rehabilitation. Pulmonary rehabilitation is a comprehensive program that includes assessment, education, therapeutic exercise and psychosocial intervention. Exercising within such a program can help increase the PH patient’s stamina, allowing the individual to become bolder in exerting themselves within the confines of a medically-safe environment. Participation can also help increase the PH patient’s self-esteem and improve self-perception by reducing anxiety levels. Additionally, important considerations centered on safety measures during physical activity, including sexual activity, will be discussed.

Oxygen: How to manage it at home, at work and on the go
Grand Salons C-D
Panelists: Angela Mann, ARNP, NP-C; Tonya Zeiger RRT, CPFT

Oxygen therapy is essential for many patients living with PH. However, it can be a difficult therapy to manage in everyday life. Join to discuss the importance of oxygen therapy; address daily usage and safety concerns; devices available’ issues with travel’ and tips to deal with barriers of use.

PH and depression: Identifying depression, when to seek help, and are depression meds safe in PH?
Grand Salons I-J
Panelists: Rebecca Anderson, PharmD, BCPS, BCCCP; Abubakr A. Bajwa, M.D., FCCP; Stacey E. Gray, MSW, Registered Clinical Social Worker Intern

Chronic medical conditions, such as PH, can often lead to an increase in mental health concerns, such as depression and anxiety. This session will focus on ways to identify depression in PH patients, effective counseling techniques for managing depression and how to connect patients to community resources. We will also review which medications may or may not be right for people with PH.

PH therapies and choices: How do you and your clinician choose what’s right for you?
Grand Salons A-B (repeat session)
Panelists: Mark J. Rumbak, M.D.; Melisa Wilson, ARNP, ACNP-BC

This session will provide information on the medication options that are available to PH patients as well as how medications are chosen based on the different WHO group classifications; medical and social considerations; and functional class. Learn more about how health care professionals monitor effectiveness of therapies chosen and how decisions to alter or advance therapies are made. Patient preferences and possible limitations in the selection of therapies ordered for PH patients will also be discussed

Networking lunch and keynote presentation
1:25 – 2:35 p.m. Grand Ballroom
Presenter: Doug Taylor, retired architect, support group leader, PH advocate, PH patient
The Kids’ Room will be closed during lunch. Please be sure to pick up your child from the Kids’ Room at 1:30 p.m. and join us in the Grant Ballroom for lunch.

Break
2:35 – 2:45 p.m.

Patient and Family-Led Sessions (Concurrent)
2:45 – 3:35 p.m.

Caring for the caregivers: Coping tips for caregivers who are stressed, overwhelmed and overworked (Caregivers only, please)
Grand Salons I-J
When you are caring for someone with PH, you may find yourself responsible for many new and important tasks — such as finances, insurance, medications, appointments, etc. — which can be overwhelming a times. This session will focus on the challenges and solutions associated with caregiving. Hear from the diverse perspectives of experienced caregivers as you participate in a small group discussion to share your thoughts and experiences on how to take care of yourself and thrive because caregivers need care, too.

Community: Finding fellow travelers on the PH journey
Grand Salons A-B
Community and connection are the two major themes of this session twill guide participants through PHA’s numerous programmatic offerings and resources. This includes connecting with others online, in person and by phone. Remember, no one is alone throughout this journey.

Filling your toolkit for the long-term battle: Improving your medical care from appointments to daily health practices
Grand Salons C-D
This session will focus on different practices that will allow you to improve your medical care and journey with PH. Keeping track of medication dosages, specialty pharmacy numbers, multiple physicians, insurance plans and more makes PH a fairly time-consuming disease. Attend this session to learn how to plan ahead and stay organized.

Living your best life: Coping tips for patients who are stressed, sad or struggling
Grand Salons G-H
People living with chronic illness frequently report feelings of sadness, disappointment, anger and helplessness. While serious, these emotions are considered normal and can be addressed in a variety of ways. This session will focus on the emotional and psychological challenges of living with a chronic illness. Hear from the speakers who have lived through the emotional and psychological challenges that come from living with PH. Share your own experiences during a small roundtable discussion.

Coffee Break
3:35 – 4 p.m. Grand Ballroom Foyer

General Session #2: specialized topic presentation
4 – 5 p.m. Grand Ballroom

PH 102: What’s on the horizon
Presenter: Abubakr A. Bajwa, M.D., FCCP
Q & A panelist: Mark J. Rumbak, M.D.

The treatment options for PH continue to expand as a result of advances in pre-clinical, epidemiologic studies and clinical trials. This session will review current PH therapies and highlight the factors that are considered by a PH team when making individual patient treatment recommendations. New therapies targeting pathways in pathogenesis of PH along with the rationale for continued research will be discussed. The session will also cover various ways PH patients may be able to participate in research studies. Join us in an interactive panel discussion with experienced clinicians as they provide further insight into the latest in PH therapy.

Program Concludes
5 p.m.
Kids’ Room and Patient Rest Stop close.

 

DIAMOND
SUPPORTER

PLATINUM
SUPPORTER

GOLD
SUPPORTERS

Actelion Pharmaceuticals US, Inc. Gilead Sciences, Inc.

Bayer HealthCare
United Therapeutics Corporation

 
This is a program of the PHA Medical Education Fund, made possible through educational grants from our supporters.

 

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