8-10 a.m. |
Registration |
8:30- 9:30 a.m. |
Continental breakfast |
9 a.m. |
Opening and Welcome Matt Granato, LL.M., MBA President and Chief Executive Officer, PHA Co-Chairs: J. Wes McConnell, M.D.; Kimberly Jackson, B.S.N., R.N.
PH 101: The Journey through Diagnosis and Treatment Speaker: Christina Benninger, M.S.N., APRN, FNP-BC, AGACNP-BC Moderator: J. Wes McConnell, M.D. Testing for a PH diagnosis can be overwhelming. These tests can include echocardiograms, right heart catheterization, pulmonary function testing, sleep studies, exercise testing, other imaging techniques and laboratory tests. Understanding what the test results mean for PH diagnoses is essential to determining appropriate treatment.
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9:50 a.m. |
Break |
10 a.m. |
Breakout Sessions (Concurrent)
Exercise, Cardiopulmonary Rehabilitation and Sexual Health in Pulmonary Arterial Hypertension David C. Booth, M.D.; Kimberly Jackson B.S.N., R.N. Discover the benefits of exercise for people with pulmonary arterial hypertension (PAH). Learn when to consider cardiopulmonary rehabilitation and discover a simple plan to start a walking program. Plus, learn how to talk to your doctors about sexual health so they address your concerns.
Balancing Sodium and Fluid Intake Brooke Benninger, M.S., R.D., L.D.; Rebecca D. Brauner, M.S.N., APRN, NP-C. Are you conscious of your sodium and fluid intake? Find out how overconsumption of fluids and sodium can exacerbate PAH symptoms. Learn how to tweak your diet to help manage symptoms.
Pediatric PH Michelle Sykes, M.D.; Kelly Wiegele, PH Parent Join a discussion for parents and families of infants, kids and teens with PH. Bring your questions about pediatric PH diagnoses and surgical and medical treatments. Potential topics include how to advocate for your child, open communication with your child’s PH care team, get emotional support, manage stress as a family, cope with treatment side effects, and transition from pediatric to adult care.
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10:50 a.m. |
Break |
11:20 a.m. |
Breakout Sessions (Concurrent)
Medication Management: The PHight against Side Effects Panelists: Gillian Leung, PharmD, BCCP; Yash Kothari, M.D. Medications are the mainstay in managing PH. However, patients’ ability to take these potentially life-altering medications are often hindered by off-target, side effects. Take home tips to manage undesirable effects so you can get the most benefit from your PH therapy.
Treatment Approaches in PH Wes McConnell, M.D.; Kimberly Robinson, APRN Your PH doctor might prescribe oral, inhaled, subcutaneous (SubQ) and intravenous (I/V) therapies to be used alone or combined. Find out why it’s important to understanding various treatment options to manage the PH symptoms. Get an overview of these treatment approaches and how they work. Plus, learn questions to ask your doctor when you are changing treatment(s).
Communication with Emergency Care Providers in case of a PH Emergency Andrew R. Kolodziej, M.D., FACC; Christina Benninger, M.S.N., APRN, FNP-BC, AGACNP-BC; Nicole Creech, Patient Advocate and PHA Board of Trustees This session will discuss the important use of a health information card and smart phone applications for PH patients in emergencies. Learn which information is needed, such as patient demographics, emergency contacts and PH provider, in urgent situations. Discover how to communicate the patient’s parenteral medications, dosage and why it’s important it is to avoid abrupt discontinuation. Plus, find out vital information caregivers or people close to the patient need to know if a patient can’t communicate in an emergency.
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12:10 p.m. |
Networking Lunch: Ask the Experts Q&A and Keynote Presentation
Ask the Experts Q&A Moderator: J. Wes McConnell, M.D. Connect with PH specialists and get answers to your questions about diagnosis, management and treatment in this open forum discussion.
Keynote Denise R. Clark, PH Patient; Evelyn Mitchell, PH Patient Hear from PH community members about their PH journeys and PHA’s role in helping them thrive.
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1:30 p.m. |
Break |
1:40 p.m. |
Support Group Sessions (concurrent)
PH Patients: Support group for PH patients Marriott Ballroom VIII Evelyn Mitchell, PH Patient Meet other patients with PH. Discuss long-term coping tips, and share stories ” in a confidential, supportive environment of how you found your new normal. This session will be facilitated by a trained PHA patient volunteer and is for patients only.
PH Parents: Support group for parents of children with PH Facilitator: Kelly Wiegele, PH Parent Meet other parents of kids with PH and share coping tips, common challenges and experiences in a confidential, supportive environment. This session is facilitated by a trained PHA parent volunteer and is for parents only.
PH Caregivers: Support group for people who love someone with PH Meet other caregivers in a confidential, supportive environment to discuss coping tips and to share your experience. This session is facilitated by a trained PHA caregiver volunteer and is for caregivers only.
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2:30 p.m. |
Break |
2:40 p.m. |
Spotlight on PH Research Speaker: J. Wes McConnell, M.D. Moderator: Kimberly Jackson B.S.N., R.N. PH treatment options continue to expand as a result of scientists committed to advance PH research. Learn how the research process leads to promising clinical trials for new therapies and how patient registries advance understanding of PH. Plus, discover how to participate in regional trials to further advance these research studies.
PHA at a Glance Katherine Kroner, Vice President, Advocacy and Patient Engagement, PHA Learn more about PHA’s vision of a world without PH empowered by hope, the resources we offer and how you can become part of the PHA community.
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3:30 p.m. |
Closing Remarks |