Kansas City, Kan.

8:30 – 9:30 a.m. – Continental Breakfast

9 – 9:50 a.m. – General Session #1: Opening and Welcome

• PH 101: The Journey through Diagnosis and Treatment
  Presenter: Timothy L. Williamson, M.D.
  Q&A Panelist: Leslie A. Spikes, M.D.
  Description: All of the testing that goes into a correct PH diagnosis can be overwhelming. These tests can include an echocardiogram, right heart catheterization, pulmonary function testing, sleep studies, exercise testing, and various other imaging techniques and laboratory tests. Understanding how the results of these tests lead to different PH diagnoses is essential to comprehending the best treatment options. This presentation will provide an overview of the diagnostic process and what information the test results provide to clinicians.

9:50 – 10 a.m. – Break

10 – 10:50 a.m. – Breakouts #1 (concurrent)

• Get Moving: Exercise and Pulmonary Rehabilitation in PH
  Panelists: Heath Latham, M.D.; Traci Stewart, R.N., M.S.N., CHFN
  Description: Starting an exercise regimen with a diagnosis of PH can be a scary thought. However, exercise is a great way to improve breathing efficiency, aerobic capacity and overall quality of life. Attend this session to learn about which questions to ask your PH care team prior to beginning an exercise routine, if you can safely exercise at home, about pulmonary rehabilitation programs and the qualifications to participate in pulmonary rehabilitation.
• Managing Side Effects of PH Medications
  Panelists: Jessica Humphrey, PharmD, BCPS; Judy Lane, R.N., B.S.N.; Leslie A. Spikes, M.D.; Rachel Stewart, R.N., B.S.N.
  Description: Dealing with PH symptoms can be emotionally and physically demanding. PH therapies are used to help alleviate the symptoms of the disease, but can also cause side effects that one must learn to manage. Panelists will discuss common side effects for PH therapies and will provide strategies and tips for how to best manage them to maintain quality of life.
• Traveling (Even Abroad!) with PH
  Panelists: Jocelyn Havener, B.S.N., R.N.; Mary Knabe, R.N., M.S.N.; Brenda McCowan, adult with PH
  Description: Does the thought of traveling with PH seem overwhelming? Are you concerned about traveling with oxygen? Panelists will discuss how all types of travel – even abroad – can be safely navigated. Panelists will also discuss how to have a plan of action in case of any unforeseen emergencies while away from home.
• Ask a Pediatric PH Expert
  Panelists: Brian F. Birnbaum, M.D., FAAP, FACC
  Description: This session will allow dedicated time for parents and families of infants, kids and teens with PH to ask questions about pediatric PH diagnoses and available surgical and medical treatments. Other special topics may be discussed, such as advocating for your child, open communication with your child’s PH care team, coping with side effects of PH therapies and the transition from pediatric to adult care for young adults, depending on the interests of participants.

10:50– 11:20 a.m. – Coffee Break

11:20 a.m. to 12:10 p.m. – Breakouts #2 (concurrent)

• Follow-up Visits: How Clinicians Make Decisions for Your Care
  Panelists: Traci Stewart, R.N., M.S.N., CHFN; Tammy Wichman, M.D.
  Description: Understanding why the frequent follow-up visits requested by a health care team are routine for PH patients can help alleviate stress and anxiety. Information collected during these appointments is crucial to ensuring that PH patients are receiving quality care and treatment. In this session, panelists will explain why some tests you might have already had to diagnose your PH are repeated. Information gathered from testing helps clinicians determine if changing, adding-on or removing PH medications can be considered when your treatment goals are not being met or when medications cause side effects that are too difficult to manage. Panelists will also discuss the concept of “goal-oriented therapy” and how patient goals, preferences and possible limitations factor into the selection of which therapy is considered, as well as the balance between the risks and benefits of taking multiple medications.
• Living a Full Life with Chronic Illness
  Panelists: David D. Barnum, Ph.D.; John Kingrey, M.D.; Judy Lane, R.N., B.S.N; Amy R. Torgerson, adult with PH
  Description: Living with chronic illness is very difficult for the patient and their family. Stress, fatigue and behavioral changes can impact daily life just as much as the physical limitations PH causes. This session will focus on how to effectively cope with the emotional and psychological challenges of living with PH. Panelists will address common challenges, including self-image concerns, relationships and intimacy, depression/anxiety, and adequate support systems.
• Preparing for Surgery, Anesthesia or a Medical Emergency with PH
  Panelists: Jessica Humphrey, PharmD, BCPS; Brenda McCowan, adult with PH; Timothy L. Williamson, M.D.
  Description: Panelists will review the considerations for PH patients getting surgery, including the risks of general anesthesia and how to minimize these risks when surgery is necessary. These considerations include: the size and function of the right side of the heart, exercise capacity/fitness of the patient, the type of surgery, the type of anesthesia (general, spinal, epidural, local or conscious sedation) and which PH therapies a patient is receiving. Panelists will describe the various components of preparing people with PH for elective surgery, such as: asking the right questions, effective communication between the patient and health care team(s) and safety precautions. Panelists will also provide strategies that PH patients and their families can use to optimize medical care during a “PH emergency.” Attendees will be educated on common symptoms of a PH emergency, causes of a PH emergency and when to call a PH doctor.

12:10 – 1:30 p.m. – Networking Lunch, Lightning Round Q&A and Keynote Presentation

• Lightning Round Q&A
  Panelists: John Kingrey, M.D.; Traci Stewart, R.N., M.S.N., CHFN; Amy R. Torgerson, adult with PH; Tammy Wichman, M.D.
  Description: If you didn’t get the chance to have all your questions answered in this morning’s sessions about PH diagnosis, management and treatment, this is your last chance to ask the experts!
• Keynote Presentation
  Presenter: Emelia Hedstrom, adult with PH
  

1:30– 1:40 p.m. – Break

1:40 – 2:30 p.m. – Support Group Sessions (concurrent)

• Caregivers: Support group for people who love someone with PH (caregivers only)
  Description: Are you a caregiver or a loved one of someone with PH? Meet 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.
• Continuing Your Journey: Support group for PH patients of more than 3 years (patients only)
  Description: Meet other patients who were diagnosed with PH three or more years ago. Discuss long-term coping tips and share stories of how you have found your “new normal” in a confidential, supportive environment. This session is facilitated by a trained PHA patient volunteer and is for patients only.
• Newly Diagnosed: Support group for people who are at risk, have been recently diagnosed or are still being diagnosed (patients only)
  Description: If you have been recently diagnosed with PH or have been living with PH for less than three years, this is the place for you to meet with other patients who 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.

2:30 – 2:40 p.m. – Break

2:40 – 3:30 p.m. – General Session #2: Presentation and Closing

• Spotlight on PH Research
  Presenter: Leslie A. Spikes, M.D.
  Q&A Panelist: Timothy L. Williamson, M.D.
  Description: The treatment options for PH continue to expand as a result of advances in treatment, care and research. This presentation will explain the questions that scientists ask and how they evolve into clinical trials and registries that aim to advance the field of PH. Additionally, regional clinical trials that are in progress and the ways PH patients may be able to participate in current research studies will be covered.
• PHA At Your Fingertips
  Presenter: Mike Knaapen, PHA Director of Patient and Caregiver Programs