PHA On the Road San Francisco

San Francisco

Saturday, Aug. 10, 2019

Schedule of Events

  • 8 – 10 a.m. – Registration

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

  • 9 a.m. – Kids’ Room & Patient Rest Stop Open

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

    • PH 101: The Journey Through Diagnosis and Treatment
      Presenter: Dana McGlothlin, M.D., FACC
      Q&A Panelist: Teresa De Marco, M.D., FACC, FHFSA
      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 understanding 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)

    • Managing Side Effects of PH Medications
      Panelists: Teresa De Marco, M.D., FACC, FHFSA; Amanda Schnell Heringer, M.S., R.N., AGCNS-BC; Helen Wang, PharmD; Crystal Zhou, PharmD, A.Ph., AHSCP-CHC, BCACP
      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 you must learn to manage. Panelists will discuss common side effects of PH therapies and will provide strategies and tips for how to best manage them to maintain quality of life.
    • Physical Activity, Exercise and Pulmonary Rehabilitation in PH
      Panelists:
      Mandar Aras, M.D., Ph.D.; Vijay P. Balasubramanian, M.D., FCCP, MRCP; Baljit Ubhi, BSRT, R.R.T.
      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 beginning an exercise routine, how you can safely exercise at home, about pulmonary rehabilitation programs and the qualifications to participate in pulmonary rehab.
    • Understanding and Navigating Health Insurance
      Panelists: Diane Caradeuc, M.P.A.; Perry A. Mamigonian, adult with PH; Janine Martin, R.N., B.S.N.
      Description: When living with a chronic illness, navigating the world of insurance is often cumbersome and confusing. During this session, panelists will review common insurance terms, what to consider when choosing a plan and ensuring you have the prescription drug coverage you need. Additionally, they will provide tips on overcoming treatment access obstacles and where to find educational resources on insurance topics and financial assistance for PH care-related costs.
  • 10:50– 11:20 a.m. – Coffee Break

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

    • Anesthesia and Surgery in PH Patients
      Panelists:
      Theresa S. Chang, M.D.; Dana McGlothlin, M.D., FACC; Rita Orth, R.N., adult with PH
      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 must be done. 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.
    • Ask a Pediatric PH Expert
      Panelist: Michelle Ogawa, CPNP
      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.
    • Optimizing Your Therapies: Changing and Combining PH Medications
      Panelists: Jamie L. W. Kennedy, M.D., FACC; Van N. Selby, M.D.
      Description: Changing, adding or removing medication may be considered when a patient’s PH gets worse, treatment goals are not met or when medications cause side effects too difficult to manage. Treatment changes are also sometimes considered if delivery method, timing or dosage needs to change – or if a new therapy that may work better for the patient is made available. Panelists will discuss the concept of “goal-oriented therapy” and how patient goals, preferences and possible limitations are considered in the selection of therapy, as well as the balance between risk and benefits of taking multiple medications.
    • Oxygen Access and Management
      Panelists: Mark Avdalovic, M.D., M.A.S., FCCP; Sachin Gupta, M.D., FCCP; Alexis Trotter, B.S., RDCS, A.E., adult with PH; Baljit Ubhi, BSRT, R.R.T.
      Description: Supplemental oxygen is a drug, just like other PH medications. Panelists will review the basics and benefits of prescribed oxygen therapy and how it works as an important medical therapy for PH patients. In addition, they will discuss how the need for supplemental oxygen is determined, access and safety concerns, and the different oxygen delivery systems. Panelists will also share travel tips for when oxygen therapy is required on the go.
  • 12:10 – 1:30 p.m. – Networking Lunch, Lightning Round Q&A and Keynote Presentation

    • Lightning Round Q&A
      Panelists:
      Susie Alvarez-Mamigonian, adult with PH; Heba Ismail, M.D., DAABIP; Emily Liebeskind, M.S., N.P.; Yuri Nam, AGACNP-BC; Van N. Selby, M.D.
      Description: If you didn’t get the chance to have all of your questions answered in this morning’s sessions about PH diagnosis, management and treatment, here’s your last chance to ask the experts! 
    • Keynote Presentation
      Presenter: Mona Singh, adult with PH, 2019 Northern California O2breathe Walk Top Fundraising Walker 
  • 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.
    • Parents: Support group for parents of kids with PH (parents only)
      Description: 
      Meet other parents of kids with PH and discuss coping tips, common challenges and share experiences in a confidential, supportive environment. This session is facilitated by a trained PHA parent volunteer and is for parents only.
  • 2:30 – 2:40 p.m. – Break

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

    • Spotlight on PH Research/PHA at Your Fingertips
      Presenter: Vijay P. Balasubramanian, M.D., FCCP, MRCP
      Q&A Panelist: Sachin Gupta, M.D., FCCP
      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.
  • 3:30 p.m. – Program Concludes

    • Kids’ Room & Patient Rest Stop close
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This is a program of the PHA Connects Fund.