Medically Led Sessions
The Medically Led Sessions are concurrent educational sessions for patients and family members that are led by a panel of medical professionals. All sessions will provide the opportunity for open interaction and discussion. These sessions will take place throughout the day on Saturday, June 23 and Sunday, June 24.
*All topics and meeting groups are subject to change.
General PH Information
Basics of PH: Everything You Wanted to Know About PAH, But You Have to Ask
Panelists:Murali Chakinala, MD, Washington University School of Medicine, St. Louis, Mo. (Chair); Maribeth Duncan, RN, MSN, ANPBC, Washington University, St. Louis Mo.; Paul Fairman, MD, Virginia Commonwealth University, Richmond, Va.; Joel A. Wirth, MD, FCCP, Maine Medical Center, Portland Maine; Aaron Waxman, MD, PhD, Brigham & Women's Hospital, Harvard Medical School, Boston, Mass.
Learn about the normal working of the heart and lungs, and hear in clear layman's terms what happens to these systems in pulmonary hypertension patients. An overview of the general treatment strategies will also be addressed. What you learn here will provide the foundation for focusing your attention on other sessions – and your own situation.
Blood Disorders and PAH: Sickle Cells, Spleens and Platelets
Panelists: Roberto Machado, MD, University of Illinois, Chicago, Chicago, Ill. (Chair); Elizabeth Klings, MD, Boston University School of Medicine, Boston, Mass.; Michael Risbano, MD, MA, FCCP, University of Pittsburgh Medical Center, Pittsburgh, Pa.; Namita Sood, MD, FCCP, Ohio State University Medical Center, Columbus, Ohio
What are the particular characteristics of pulmonary hypertension in this group of disorders? This session will focus on presenting the recent diagnostic and therapeutic advances in sickle cell and thalassemia associated pulmonary hypertension.
Congenital Heart Disease and PH
Panelists: Richard J. Krasuski, MD, The Cleveland Clinic, Cleveland, Ohio (Chair); Curt Daniels, MD, FACC, The Heart Center Nationwide Children's Hospital, The Ohio State University, Columbus, Ohio; Wayne Franklin, MD, FACC, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas; Alexander (Sasha) Opotowsky, MD, Children's Hospital Boston, Brigham & Women's Hospital, Harvard Medical School, Boston, Mass.
This session will focus on the various forms of congenital heart disease that might lead to PH and take a look at the options available for patients. We will review the known medical therapies for PH with congenital heart disease and discuss when patients should consider PH medications.
Connective Tissue Disease and PH: A Complex Relationship
Panelists: Virginia Steen, MD, Georgetown University, Washington, D.C. (Chair); Christine Archer-Chicko, MSN, CRNP, Penn Presbyterian Medical Center, Philadelphia, Pa.; Aryeh Fischer, MD, University of Colorado Hospital, Denver, Colo.; James Klinger, MD, Rhode Island Hospital, Providence, R.I.
In this session, we will review the characteristics of scleroderma and pulmonary hypertension, focusing on the multiple ways scleroderma causes PH and the impact of the involvement of other organs, such as the heart, kidneys and muscles. Our multi-disciplinary panel including specialists in pulmonology, rheumatology and cardiology will discuss recent developments in the treatment of this disease and answer questions from the audience.
Diagnostics in PH – What Do All the Tests Mean?
Panelists: Paul Forfia, MD, University of Pennsylvania, Philadelphia, Pa. (Chair); Charles Burger, MD, Mayo Clinic College of Medicine, Jacksonville, Fla.
The aim of this session will be to review the standard diagnostic testing used to diagnose and manage patients with pulmonary hypertension. We will review echocardiogram, cardiac catheterization, lab testing and various imaging modalities. We will also discuss exercise testing such as the six-minute walk test.
Early PAH – Recognition, Diagnosis, Treatment and Outcomes
Panelists: Jim White, MD, PhD, University of Rochester, Rochester, N.Y. (Chair); Lynn Brown, MD, PhD, Intermountain Healthcare Center, Murray, Utah; Zeenat Safdar, MD, FCCP, FACP, Baylor College of Medicine, Houston, Texas; Corey Ventetudo, MD, Albert Medical School of Brown University, Providence, R.I.; Lisa Wheeler, MT, Vanderbilt University, Nashville, Tenn.
This session will present advances in awareness, screening and testing which should help achieve earlier diagnosis for some patients. We will review helpful information from the REVEAL Registry which helps us understand the “predictors” of better and worse survival with the disease. We will talk about how the providers on the panel use the results of individual tests to guide therapy, and attendees will observe that different providers may have very different approaches to similar patients.
Familial/Genetics and PAH
Panelists: C. Gregory Elliott, MD, Intermountain Medical Center, Murray, Utah (Chair); Wendy Chung, MD, PhD, Columbia University, New York, N.Y.; James E. Loyd, MD, Vanderbilt University Medical Center, Nashville, Tenn.; Lisa Wheeler, MD, Vanderbilt University, Nashville, Tenn.
What is familial pulmonary arterial hypertension? Learn about what is known about the genetic basis of pulmonary arterial hypertension, and how this knowledge affects patients and their families. Current genetic tests will be discussed including what is done, where one can get such testing and who pays for the tests. The panel will also address the questions: "Is the treatment any different if abnormal genetic test results are documented?" and "Can genes determine the safety and usefulness of your medication?"
Heart Failure – Salt, Water and Diuretics: Am I Drinking Too Much or Not Enough? Managing Fluids and Water Weight Gain in PH
Panelists: Ronald J. Oudiz, MD, FACP, FACC, FCCP, LA Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, Calif. (Chair); Roblee Allen, MD, University of California, Davis Medical Center, Sacramento, Calif.; Michele Gilbert, MSN, NP-C, CCRN; Bon Secours Charity Health System, Suffern, N.Y.; Jim White, MD, PhD, University of Rochester, Rochester, N.Y.
Learn about the importance of fluid balance (intake and output) in heart failure. Attendees will learn about optimizing the body's water balance with good salt and water habits, daily weight checks and use of diuretics ("water pills").
PH in the Setting of Liver Disease – What Makes it Different?
Panelists: Sonja Bartolome, MD, FCCP, UT Southwestern Medical Center, Dallas, Texas (Chair); Steven Kawut, MD, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pa.; Laura Restall, RN, UT Southwestern Medical Center, Dallas, Texas
This session will discuss the special circumstances of patients with both liver disease and pulmonary hypertension, including medication considerations, complications and liver transplantation.
PH and Lung Disease/Sleep Apnea
Panelists: Omar A. Minai, MD, Cleveland Clinic, Cleveland, Ohio (Chair); Charles Burger, MD, Mayo Clinic College of Medicine, Jacksonville, Fla.; Scott Marlow, RT, Cleveland Clinic, Cleveland, Ohio; Adriano Tonelli, MD, Cleveland Clinic, Beachwood, Ohio
During this session, we will discuss so-called Group B pulmonary hypertension—PH occurring due to parenchymal lung disease or low oxygen states. The current evaluation of and therapies for these conditions will be covered.
Surgery and Anesthesia in Patients with PH: What You Should Know
Panelists: Dana McGlothlin, MD, University of California San Francisco, San Francisco, Calif. (Chair); Robert Scott, MD, PhD, FACC, Mayo Clinic Arizona,Phoenix, Ariz.; Nimalijeet Tarango, RN, NP, UCSF Medical Center, San Francisco, Calif.; James Tarver, III, MD, Orlando Heart Center, Orlando, Fla.
This session will discuss preoperative evaluation and the risks for PH patients undergoing surgery, including the effects of anesthesia, type of operation and ICU care. Learn about the precautions you should take and what to be aware of when considering surgery.
Thromboembolic Disease and PH: The Spectrum of Therapies
Panelists: Victor Tapson, MD, FCCP, FRCP, Duke University Medical Center, Durham, N.C. (Chair); Franck Rahaghi, MD, Cleveland Clinic, Weston, Fla.; Victor Test, MD, University of Oklahoma-Tulsa, Tulsa, Okla.
Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is a progressive disease that can result in severe shortness of breath and disability. It also appears to be more common than previously realized. Unlike most other causes of pulmonary hypertension, CTEPH is often cured with surgery (pulmonary endarterectomy), although very few centers perform this procedure. We will discuss the diagnosis and medicinal and surgical treatment of chronic thromboembolic pulmonary hypertension with a particular focus on treatment and outcomes.
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Living with PH/Alternative Approaches
Panelists: Hector Cajigas, MD, Henry Ford Hospital, Detroit, Mich. (Chair); Rana Awdish, MD, Henry Ford Hospital, Detroit, Mich.; Deb McCollister, RN, BSN, University of Colorado Denver, Aurora, Colo.
We know that vasodilator treatment improves exercise capacity and symptoms in patients with pulmonary hypertension. Besides medical treatments and modifications to lifestyle, there are several nutritional and dietary supplements on the market that claim to reduce leg swelling, enhance breathing and increase exercise capacity in people with PH and heart failure. This session will help raise greater awareness about various nutritional, herbal and dietary supplements in the context of PH.
Breathing Better – Oxygen Supplementation and Pulmonary Rehabilitation
Panelists: Roham Zamanian, MD, Stanford Medical, Portola Valley, Calif. (Chair); Jeffrey Sager, MD, MSc, FCCP, Santa Barbara Pulmonary Consultants, Santa Barbara, Calif.; Edda Spiekerkoetter, MD, Stanford University Medical Center, Stanford, Calif.
During this session we will discuss why patients may need oxygen supplementation and the possible benefits of oxygen supplementation and pulmonary rehabilitation.
Defensive Dining: Eating to Maintain Health and Avoid Complications – How to Eat Smart
Panelists: Charles Burger, MD, Mayo Clinic College of Medicine, Jacksonville, Fla. (Chair); Glenna Traiger, RN, MSN, University of California Los Angeles, Los Angeles, Calif.; Karen Verlander, PH patient, Jacksonville, Fla.
Your diet can affect PH in several ways. Examples include sodium and fluid restriction to manage heart failure, maintaining your ideal body weight and foods that interact with medications. Additionally, many patients have questions about the use of nutritional supplements, vitamins and herbs to help treat PH.
Education for the PH Caregiver
Panelists: Roxana Sulica, MD, Beth Israel Medical Center, New York, N.Y. (Chair); Nancy Bair, RN, CNS-BC, Cleveland Clinic Health System, Cleveland, Ohio; Rebecca Fenton, RN, Beth Israel Medical Center, New York, N.Y.; Melissa Israel, PA, UT Health Science Center, San Antonio, Texas; Ioana Preston, MD, Tufts Medical Center, Boston, Mass.
In this session for family members of adult PH patients we will discuss what caregivers should know about PH and how they can manage multiple priorities while caring for their own needs.
Emergency Situations and Primary Care Issues
Panelists: Michael McGoon, MD, Mayo Clinic, Rochester, Minn. (Chair); Liz Brigham, PH patient, Waynesville, N.C.; Louise Durst, RN, Mayo Clinic, Rochester, Minn.; Eric Fenstad, MD, Mayo Clinic, Rochester, Minn.; Crystal Weber, RN, Duke University Medical Center, Durham, N.C.
In certain situations pulmonary hypertension can become an emergency, either because of progression of the underlying disease, due to some superimposed complication, such as a blood clot or pneumonia, or because of a complication of a medication or the delivery system. Our focus will be on what caused the emergency and what should be done about it—who to call, what immediate measure to take and where to go.
Exercise/Yoga/Tai Chi – What Can Be Done and What To Avoid
Panelists: Kelly Chin, MD, UT Southwestern Medical Center, Dallas, Texas (Chair); Helena Purl, RN, BSN, CCRC, Baylor College of Medicine, Houston, Texas; Roxana Sulica, MD, Beth Israel Medical Center, New York, N.Y.
This session will focus on the role of exercise in pulmonary hypertension. We will set aside ample time to take questions from the audience about their exercise habits and goals.
Focusing on Emotional Health and Optimizing Quality of Life
Panelists: Keith Swetz, MD, Mayo Clinic, Rochester, Minn. (Chair); Dan Grinnan, MD, VCU Health System, Richmond, Va.; Robert Scott, MD, Mayo Clinic Arizona, Phoenix, Ariz.; Traci Stewart, RN, MSN, University of Iowa, Iowa City, Iowa
The goal of this session is to discuss how to optimize emotional health and quality of life while dealing with invasive treatments and a difficult disease. An overview of how palliative care is provided will be included. Specific focus will be on symptom management options and how you can maintain quality of life within this disease.
Intimacy Issues – Men Only
Panelists: Michael A. Mathier, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. (Chair); Amresh Raina, MD, Allegheny General Hospital, Pittsburgh, Pa.; Michael Risbano, MD, MA, FCCP, University of Pittsburgh Medical Center, Pittsburgh, Pa.
Intimacy issues concern us all. This is an area where 100% of us want answers to our personal questions, and fewer than 50% of us feel comfortable enough to ask! What is intimacy? How does chronic illness change our intimate relationships? How do I communicate with my loved ones about how I feel? These and many more questions will be addressed during this session.
Intimacy Issues – Women Only
Panelists: Ioana Preston, MD, Tufts Medical Center, Boston, Mass. (Chair); Kristin Highland, MD, Medical University of South Carolina, Charleston, S.C.; Martha Kingman, DNP, FNP-C, UT Southwestern Medical Center, Dallas, Texas
Sex is a basic human function and a fundamental part of life. hronic medical conditions and medications can adversely affect sexual functioning and therefore diminish quality of life. This session will explore these important issues and discuss appropriate methods of birth control for PH patients.
Obesity, Diet Treatments and PH
Panelists: Namita Sood, MD, FCCP, Ohio State University Medical Center, Columbus, Ohio (Chair); Loida Johnson, CRNP, University of Maryland Medical Center, Baltimore, Md.; Tim Lahm, MD, Indiana University School of Medicine, Indianapolis, Ind.
Diet pills have been implicated as a cause of PAH. However, obesity may also play a role in the development of the disease. Maintaining an ideal body weight can improve symptoms of PAH. This session will address the role of diet pills, obesity as a cause of PAH and the importance of a healthy lifestyle and maintaining an ideal weight.
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Changing to Different PH Medications : Important Things to Know Before, During and After
Panelists: David Badesch, MD, University of Colorado Health Sciences Center School of Medicine, Aurora, Colo. (Chair); Cheryl Abbott, RN, CCRP, University of Colorado Denver, Aurora Colo.; Stephen Mathai, MD, MHS, Johns Hopkins University, School of Medicine, Baltimore, Md.; Hunter Champion, MD, University of Pittsburgh, Pittsburgh, Pa.
A wealth of effective and approved PH medications are currently available to PH patients, and new medications are on the way. For patients already on a medication, there may be a reason to switch to another medication, such as failure to improve, side effects or the complex nature of some medications. In this session, we will explore and discuss questions around the issue of switching between PH medications.
Combination Treatments in PAH: When and Why
Panelists: Nicholas Hill, MD, Tufts University School of Medicine, Boston, Mass. (Chair); Harold Palevsky, MD, Penn Presbyterian Medical Center, Philadelphia, Pa.; Ioana Preston, MD, Tufts Medical Center, Boston, Mass.; Jeffrey Sager, MD, MSc, FCCP, Santa Barbara Pulmonary Consultants, Santa Barbara, Calif.
Treatment options for pulmonary hypertension have dramatically expanded with the availability of multiple medications. If one treatment is good, are two better? When should medication be adjusted or switched, and what evidence is available to guide therapy? This session will focus on the rationale for combination therapy and review results of studies of combination therapy.
Panelists: Vallerie McLaughlin, MD, University of Michigan, Ann Arbor, Mich. (Chair); Wendy Hill, MSN, NP-C, VA Greater LA Healthcare System/UCLA, Los Angeles, Calif.; Robert Schilz, DO, PhD, Case Western University School of Medicine, Cleveland, Ohio; Victor Tapson, MD, FCCP, FRCP, Duke University Medical Center, Durham, N.C.
Prostacyclins (epoprostenol, treprostinil) are among the most potent and effective therapies for patients with advanced pulmonary arterial hypertension. However, there are side-effects and complications of these therapies due to their unique delivery systems. This session will review the data with the multiple infused prostacyclins currently available, focusing on patient selection and management of side effects and complications.
Inhaled Therapies for PAH
Panelists: Ivan Robbins, MD, Vanderbilt University, Nashville, Tenn. (Chair); Kimberly Farmer, RN, BSN, Vanderbilt University Medical Center, Nashville, Tenn.; Gautam Ramani, MD, University of Maryland, Baltimore, Md.; James Runo, MD, University of Wisconsin, Madison, Wisc.
Prostacyclins are highly effective medications for treating PAH. In the past, prostacyclins had to be given directly through a catheter into a vein or under the skin. There are now two FDA-approved prostacyclins that are given by the inhaled route (iloprost, treprostinil). There are also three oral medications being studied that affect the prostacyclin pathway: two prostacyclins (treprostinil, beraprost) and one medication that acts similar to prostacyclins by activating the prostacyclin receptor. This session will review the safety and benefits of inhaled prostacyclins and outline the current research on oral prostacyclins.
PDE-5 Inhibitors and Endothelin Receptor Antagonists
Panelists: Richard Channick, MD, Massachusetts General Hospital, Boston, Mass. (Chair); Adaani Frost, MD, Baylor College of Medicine, Houston, Texas; Sandra Lombardi, RN, UCSD Medical Center, Encinitas, Calif.; Srinivas Murali, MD, West Penn Allegheny Health System, Pittsburgh, Pa.
This session will cover the phosphodiesterase inhibitors (PDE-5 inhibitors) (sildenafil, tadalafil) and their role in the treatment of pulmonary arterial hypertension. The mechanism of action of these drugs will be discussed as well as their potential benefits and associated risks. The evidence supporting their use will also be presented.
Surgical Treatments: Lung Transplant and Other Procedures
Panelists: Sean Studer, MD, Newark Beth Israel Medical Center, Newark, N.J. (Chair); M. Patricia George, MD, University of Pittsburgh, Pittsburgh, Pa.; Fernando Torres, MD, UT Southwestern Medical Center, Dallas, Texas
This session will review the who, when and what procedure for lung transplant in the setting of PH. The updated lung allocation scoring system for transplant will be discussed, along with atrial septostomy and thromboendarterectomy.
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Future of PH/Research
Investigational Therapies/Stem Cell in PH – What's On The Horizon
Panelists: Raymond Benza, MD, Allegheny General Hospital, Pittsburgh, Pa. (Chair); H. James Ford, MD, University of North Carolina at Chapel Hill, Chapel Hill, N.C.; Duncan Stewart, MD, The Ottawa Hospital, Ottawa, Ontario, Canada; Scott Visovatti, MD, University of Michigan, Ann Arbor, Mich.
This presentation will highlight the various clinical trials that are currently active and discuss the trials that have recently been completed. During this session, we will also discuss stem cells as a potential novel therapy for PAH, particularly for patients with advanced disease that is not responding to available therapies.
Guinea Pig or Hero – The Journey through Clinical Trials
Panelists: Karen Fagan, MD, University of South Alabama, Mobile, Ala. (Chair); Serpil Erzurum, MD, Cleveland Clinic Lerner College of Medicine, Cleveland, Ohio; Jeremy Feldman, MD, Arizona Pulmonary Specialists, LTD, Phoenix, Ariz.; Steven Kawut, MD, Pereleman School of Medicine, University of Pennsylvania, Philadelphia, Pa.
Clinical trials in pulmonary arterial hypertension have led to the FDA approval of nine medicines over the past 17 years! This is great for the community as a whole, but what is it like for an individual patient to participate in a research trial? Experienced researchers will discuss the benefits and potential risks of clinical trials.
PAH Drug Development: The Pipeline Runneth Over
Panelists: Mardi Gomberg-Maitland, MD, MSc, University of Chicago Medical Center, Chicago, Ill. (Chair); Sonja Bartolome, MD, FCCP, UT Southwestern Medical Center, Dallas, Texas; Donneea Edwards-Moore, RN, MSN, University of Chicago Medical Center, Chicago, Ill.; Fernando Torres, MD, UT Southwestern Medical Center, Dalls, Texas; Jason Yuan, MD, PhD, University of Illinois at Chicago, Chicago, Ill.
There are now nine approved PAH drugs in the U.S., several of which are available in multiple formulations. At least eight more drugs are currently in development. We will discuss how the newer drugs will impact drug selection for an individual patient.
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Ask a Pediatrician - Kids Only (10+ years)
Panelists: Dunbar Ivy, MD, University of Colorado School of Medicine, Denver, Colo. (Chair); Russel Hirsch, MD, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
This session, for kids only, will focus on all aspects of PH in a kid-friendly, open and interactive session.
Ask a Pediatrician – For Parents of Infant-11 year-old Patients
Panelists: Dunbar Ivy, MD, University of Colorado School of Medicine, Denver, Colo. (Chair); Eric Austin, MD, MS, Vanderbilt University School of Medicine, Nashville, Tenn.; Olatunji Williams, MD, Peyton Manning Children’s Hospital at St. Vincent’s, Indianapolis, Ind.
The aims of therapy for pediatric patients are unique. As advances in therapeutic options become available, consideration for this is paramount. This session will focus on treatment strategies and their impact on the patient (age 0-11) and family.
Ask a Pediatrician – For Parents of 12-18 year-old Patients
Panelists: Delphine Yung, MD, Seattle Children’s Hospital, Seattle,Wash. (Co-Chair); Erika Berman Rosenzweig, MD, Columbia University Medical Center, New York, N.Y. (Co-Chair); Anne Davis, RN, Seattle Children's Hospital, Seattle, Wash.; Stephanie Harris, RN, BSN, University of Washington, Seattle, Wash.; Mary Mullen, MD, PhD, Children's Hospital, Boston, Mass.
Discuss the transition from pediatric to adult PH care providers,focusing on pre-transition teaching and patient responsibility. Learn how to make the transition smooth for patient, parent and provider.
New Medical Therapy for Children with PH
Panelists: Erika Berman Rosenzweig, MD, Columbia University Medical Center, New York, N.Y. (Co-Chair); Robyn Barst, MD, Professor Emeritus, Columbia University, New York, N.Y. (Co-Chair); Eric Austin, MD, MS, Vanderbilt University School of Medicine, Nashville, Tenn.; Daniela Brady, RN, Columbia University Medical Center, New York, N.Y.; Mary Mullen, MD, PhD, Boston Children's Heart Foundation, Boston, Mass.
The purpose of this session is to describe how newly approved medications for adults are being used in children.
Teeth, Bones and Other Surgical Problems for Kids with PH
Panelists: Brian Hanna, MD, Children's Hospital of Philadelphia, Philadelphia, Pa. (Chair); Robyn Barst, MD, Columbia University, New York, N.Y.;Michelle Calderbank, RN, The Children's Hospital, Aurora, Colo.; Steve Walker, MS, RN, CRNP; Children’s Hospital Of Philadelphia, Philadelphia, Pa.
Panelists will discuss the issues around anesthetics, surgical procedures and simple things to ask before PH kids undergo procedures. We will discuss everything from dental work to lung transplantation.
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