Medically Led Sessions
The Medically Led Sessions are concurrent educational sessions for patients and family members presented by panels of expert medical professionals. All sessions will provide the opportunity for open interaction and discussion. These sessions will take place throughout the day on Saturday, June 21 and Sunday, June 22.
All topics and meeting groups are subject to change.
General PH Information
Adult Congenital Heart Disease, Blood Disorders and Liver Disease in the Setting of PH
Chair: Michael Krowka, MD, Mayo Clinic, Rochester, Minn.
Panelists: Harrison Farber, MD, Boston University School of Medicine, Boston, Mass.; Richard Krasuski, MD, Cleveland Clinic Health System, Cleveland, Ohio; Susan Tointon, RN, Mayo Clinic, Rochester, Minn.
The goal of this session is address the clinical management approaches of three different disorders that can be associated with pulmonary artery hypertension. Diagnostic criteria and special concerns for each disorder will be reviewed. Treatments options (medical and organ transplant) will be discussed.
Connective Tissue Diseases and PH
Chair: Aryeh Fischer, MD, National Jewish Health, Denver, Colo.
Panelists: Charles Gallegos, NP, University of New Mexico Hospitals, Albuquerque, N.M.; Lana Melendres-Groves, MD, University of New Mexico School of Medicine, Albuquerque, N.M.; Virginia Steen, MD, Georgetown University, Washington, D.D.
In this session, we will describe the spectrum of connective tissue disease and define the different types of pulmonary hypertension (PH) encountered. We will focus the discussion on systemic sclerosis (scleroderma) because PH is particularly common in this connective tissue disease and because PH has a profound impact on the course of the disease. A multi-disciplinary approach to screening scleroderma patients for PH will be addressed; we will highlight the importance of early diagnosis and early treatment intervention in these cohorts. Finally, we will discuss treatment strategies for patients with connective tissue disease-associated PH.
Diagnostics in PH
Chair: Joel Wirth, MD, Maine Medical Center, Portland, Maine
Panelists: Natalie Kitterman, BSN, RN, CCRP, Intermountain Medical Center, Murray, Utah; Kerri Akaya Smith, MD, University of Pennsylvania School of Medicine, Philadelphia, Pa.; Roxana Sulica, MD, Beth Israel Medical Center, New York, N.Y.
This session will review the current classification/definitions of pulmonary hypertension (PH), as well as standard testing methods used to fully diagnose patients. Diagnostic tests such as echocardiography, cardiac catheterization, pulmonary function tests, sleep studies, exercise tests and other lab and imaging modalities will be discussed.
Familial Genetics and PAH
Chair: Eric Austin, MD, MSCI, Vanderbilt University Medical Center, Nashville, Tenn.
Panelists: C. Gregory Elliott, MD, Intermountain Medical Center, Murray, Utah; Edda Spiekerkoetter, MD, Stanford University Medical Center, Stanford, Calif.; Lisa Wheeler, MT (ASCP), Vanderbilt University Medical Center, Nashville, Tenn.
The purpose of this session is to discuss what is known about the inheritance of pulmonary arterial hypertension (PAH), with special emphasis on familial or hereditable PAH. We will develop an overview of the way that the disease may be inherited and how individuals and families can deal with the risks and the knowledge that there is a family disease. We will discuss the possibility that a genetic basis of disease may be present in persons who have no other known family member with pulmonary hypertension. We will discuss the percentage of patients that carry the known genes that are associated with PAH. We will discuss the benefits and risks and limitations of genetic testing.
Obesity and Diet with PH
Chair: Juliana Liu, NP, Stanford School of Medicine, Stanford, Calif.
Panelists: Michael Ryan, MD, Central Coast Chest Consultants, San Luis Obispo, Calif.; Roham Zamanian, MD, Stanford University Medical Center, Stanford, Calif.
The goal of this session is to discuss how overweightness, obesity and diet treatments may affect pulmonary hypertension, and how to improve overall exercise capacity and quality of life. Specific focus will be on how to maintain an optimal weight, other issues that may be related to obesity, and how to maintain quality of life within the disease.
PH and Left Heart Disease – The Great Masquerader
Chair: Peter Engel, MD, The Christ Hospital, Cincinnati, Ohio
Panelists: Jonathan Rich, MD, Northwestern University Feinberg School of Medicine, Chicago, Ill.; Frances Rogers, MSN, CRNP, Temple University Hospital, Philadelphia, Pa.
The goal of this session is to introduce the concept of pulmonary hypertension (PH) in the setting of left heart disease, particularly associated with diastolic dysfunction of the left ventricle. We will discuss the typical patient profile seen with this condition, which is one of the most common causes of PH. Similarities and contrasts with pulmonary arterial hypertension (PAH) will be emphasized. Treatment options will be described, as well as types of treatment which might not be best suited to this condition.
PH and Lung Disease, Sleep Apnea and Oxygen Supplementation
Chair: Stephen Mathai, MD, MHS, Johns Hopkins Hospital, Baltimore, Md.
Panelists: Learned Gonzales, MD, Desert Regional Medical Center, Eisenhower Memorial Hospital, Rancho Mirage, Calif.; Corey Ventetuolo, MD, Alpert Medical School of Brown University, Providence, R.I.; David Zisman, MD, Sansum Clinic, Santa Barbara, Calif.
The goal of this session is to discuss how lung diseases are associated with pulmonary hypertension (PH). We will discuss how various forms of lung disease cause PH and how they should be evaluated and treated. We will also cover the use of devices in treating PH related to lung disease, including continuous positive airway pressure (CPAP) and supplemental oxygen.
PH Related to Blood Clots (CTEPH)
Chair: Kim Kerr, MD, University of California, San Diego Medical Center, La Jolla, Calif.
Panelists: Nancy Bair, RN, MSN, CNS-BC, Cleveland Clinic Health System, Cleveland, Ohio; Richard Channick, MD, Massachusetts General Hospital, Boston, Mass.; Gustavo Heresi, MD, Cleveland Clinic Health System, Cleveland, Ohio
Chronic thromboembolic pulmonary hypertension (CTEPH) is a serious complication of a common disorder of venous thromboembolism. CTEPH and pulmonary arterial hypertension share important similarities, and yet critical differences including the potential for a curative surgery in the case of CTEPH. This session will review diagnostic considerations and the latest treatment options for CTEPH.
PH "Simplified" – The Basics of PH
Chair: Vijay Balasubramanian, MD, University of California, San Francisco - Fresno, Fresno, Calif.
Panelists: Deedre Boekweg, RN, BSN, CCRP, Intermountain Medical Center, Murray, Utah; C. Gregory Elliott, MD, Intermountain Medical Center, Murray, Utah; Vallerie McLaughlin, MD, University of Michigan Health System, Ann Arbor, Mich.
This session will explain heart and lung function and what happens to these systems in pulmonary hypertension patients. The panel will discuss how different screening and tests help guide therapy. This general overview of the disease will provide you with the educational foundation you will need to focus your attention on other sessions.
Surgery and Anesthesia in PH Patients
Chair: Charles Burger, MD, Mayo Clinic, Florida, Jacksonville, Fla.
Panelists: José Díaz-Gómez, MD, Mayo Clinic, Florida, Jacksonville, Fla.; Brian Graham, MD, University of Colorado, Denver, Aurora, Colo.
The purpose of the discussion will be to review the potential risks of anesthesia and surgical procedures in patients with pulmonary hypertension, define the various components of perioperative management, and adequately prepare for elective surgery in the event it is determined that the procedure is important for your health.
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Living with PH
Cardiac and Pulmonary Rehabilitation in PH
Chair: Todd Bull, MD, University of Colorado, Denver, Aurora, Colo.
Panelists: Gerilynn Connors, BS, RRT, RCP, Inova Fairfax Hospital, Falls Church, Va.; Michael Lewis, MD, Cedars-Sinai Medical Center, Los Angeles, Calif.; Bradley Maron, MD, Brigham and Women’s Hospital, Boston, Mass.
This session will cover why and how patients may benefit from pulmonary and cardiac rehabilitation. It was assumed for many years that patients with pulmonary hypertension (PH) should avoid exercise, as the added strain on the right ventricle could be harmful. The last few years however, have provided evidence that exercise and exercise rehabilitation programs can benefit patients with PH, for many of the same reasons that they benefit the general population and patients with other cardio-pulmonary diseases. Compelling studies have demonstrated that contemporary cardiac and pulmonary rehabilitation can improve exercise performance and quality of life, perhaps to a greater degree than even pharmacologic therapy.
Care for the Adult PH Caregiver
Chair: Christine Archer-Chicko, MSN, CRNP, Penn Presbyterian Medical Center, Philadelphia, Penn.
Panelists: Jean Elwing, MD, University of Cincinnati, Cincinnati, Ohio; Natalie Kitterman, BSN, RN, CCRP, Intermountain Medical Center, Murray, Utah; Virginia Maril, PhD, California Lutheran University, Thousand Oaks, Calif.
This session, especially targeted towards family members of adult pulmonary hypertension (PH) patients, will provide an overview of what caregivers should know about PH and how they can manage multiple priorities while caring for their own needs.
Coping with Chronic Illness: Let’s make the journey together!*
Chair: Traci Stewart, RN, MSN, University of Iowa Hospitals and Clinics, Iowa City, Iowa
Panelists: Landra Slaughter, RN, CCRC, University Hospitals Case Medical Center, Cleveland, Ohio; Tania Von Visger, RN, MS, CNS, Ohio State University Medical Center, Columbus, Ohio
This session will focus on coping with chronic illness over the long term for caregivers and patients. Caregivers can be family members, friends, or healthcare providers. Long term exposure to the challenges and stress of providing care and/or living with a chronic illness can lead to physical and emotional symptoms. Caregivers and patients can experience difficulty coping, compassion fatigue, burnout and survivors guilt. It is important to increase awareness of potential characteristics that can develop when coping with illness. Strategies to cope with chronic illness, compassion fatigue and survivor’s guilt will be discussed.
Chair: Timothy Williamson, MD, University of Kansas Hospital, Kansas City, Kan.
Panelists: Eric Fenstad, MD, Mayo Clinic, Rochester, Minn.; Jocelyn Havener, RN, BSN, University of Kansas Hospital, Kansas City, Kan.; Jeffrey Kline, MD, Indiana University Health, Indianapolis, Ind.
Patients with pulmonary hypertension are at risk for experiencing medical emergencies. This session will discuss common emergency situations, avoiding emergencies, recognition of emergencies, and emergency preparedness.
Chair: Mary Beth Brown, PhD, PT, ATC, Indiana University, Indianapolis, Ind.
Panelists: Debbie Koehl, MS, RRT-NPS, AE-C, Indiana University School of Medicine, Indianapolis, Ind.; Murali Chakinala, MD, Washington University School of Medicine, St. Louis, Mo.; Crystal Weber, RN, Duke University Medical Center, Durham, N.C.
The goal of this session is to discuss how exercise may affect pulmonary hypertension (PH) and how to incorporate regular exercise into your lifestyle. Specific focus will be on sharing the latest evidence of exercise benefit for PH, and tips on how to get started and stick with a regular exercise program for maximal benefit.
Intimacy Issues – Men
Chair: Franck Rahaghi, MD, Cleveland Clinic Florida, Weston, Fla.
Panelists: Abubakr Bajwa, MD, University of Florida College of Medicine, Jacksonville, Fla.; Dennis Disney, RRT, Indiana University Health, Indianapolis, Ind.; Victor Test, MD, Texas Tech University Health Sciences Center, Lubbock, Texas
This session will provide a comfortable setting for men to communicate about intimacy issues. Panelists will address concerns regarding the effect of this chronic illness on intimacy in relationships, and how to improve quality of life.
Intimacy Issues – Women
How to Keep Your Disease from Overtaking Your Life: An In-Depth Discussion on Maintaining Relationships and Intimacy in the Face of PH
Chair: Sonja Bartolome, MD, University of Texas - Southwestern Medical Center, Dallas, Texas
Panelists: Karen Fagan, MD, University of South Alabama, Mobile, Ala.; Sandra Lombardi, RN, University of California, San Diego Medical Center, La Jolla, Calif.; Ioana Preston, MD, Tufts Medical Center, Boston, Mass.
This session will provide a comfortable setting for women to communicate about intimacy issues. Panelists will address concerns regarding the effect of this chronic illness on intimacy in relationships, and how to improve quality of life.
Nutrition, Salt, Water and Diuretics: Managing Diet, Fluids and Water Weight Gain with PH
Chair: Tim Lahm, MD, Indiana University School of Medicine, Indianapolis, Ind.
Panelists: Loida Johnson, CRNP, University of Maryland Medical Center, Baltimore, Md.; Franz Rischard, DO, MS, University of Arizona, Tucson, Ariz.; Linda Ulerich, RD, Indiana University Health Methodist Hospital, Indianapolis, Ind.
Panelists will discuss how a patient’s diet can improve living with pulmonary hypertension. Attendees will learn how to optimize the body’s water balance with good salt and water habits, learn the importance of maintaining a proper diet and a healthy weight, and learn tricks to better deal with the side effects of water pills.
One Day at a Time... Coping with PAH and How Palliative Care Can Help
Chair: Zorina Schultz, RN, MSN, CCRN, Santa Barbara Cottage Hospital, Santa Barbara, Calif.
Panelists: Lindy Landzaat, DO, University of Kansas Medical Center, Kansas City, Kan.; Janet Pinson, NP, Virginia Commonwealth University Health System, Richmond, Va.; James Tarver, MD, Orlando Health Heart Institute, Orlando, Fla.
Day-to-day life with a chronic disease is a challenge to patients, caregivers and their families. The goal of this session is to provide tools for coping with the “good days” as well as the “bad days,” and provide some new options for improving quality of life.
PH and Other Comorbid Illnesses: How do I cope with PAH and a new, important medical problem?*
Chair: R. James White, MD, PhD, University of Rochester Medical Center, Rochester, N.Y.
Panelists: Jason Fritz, MD, University of Pennsylvania School of Medicine, Philadelphia, Pa.; James Runo, MD, University of Wisconsin-Madison, Madison, Wis.; Glenna Traiger, RN, MSN, University of California, Los Angeles Medical Center, Los Angeles, Calif.
It sounds almost mean, but as our treatments for pulmonary hypertension (PH) allow patients to enjoy longer life, patients with PH are then susceptible to the problems of ‘regular’ people as they age. Problems like diabetes, systemic (ordinary) hypertension, chronic kidney disease, cancers (like lymphoma), coronary artery disease, and osteoporosis become more prominent as people age, and PH does not ‘protect’ you from developing other serious medical problems. Unlike some of the other sessions (e.g., genetics or treatment), there is not too much for the panel leadership to talk about without questions from the audience. Your participation will end up defining the topics in real time, and we look forward to an informative and supportive session.
Women’s Reproductive Health and PH*
Chair: Karen Fagan, MD, University of South Alabama, Mobile, Ala.
Panelists: Avinash Patil, MD, Indiana University School of Medicine, Indianapolis, Ind.; Ioana Preston, MD, Tufts Medical Center, Boston, Mass.; Dianne Zwicke, MD, Aurora St. Luke's Medical Center, Milwaukee, Wis.
The goal of this session is to discuss the importance of reproductive health issues in pulmonary hypertension (PH), including recommendations for pregnancy prevention, routine well-woman health care, gynecological procedures, etc. A panel of PH experts and an OB/GYN specialist will discuss important issues regarding reproductive health for women with PH. PH patients are strongly advised to avoid pregnancy due to substantially increased risk of death to the mother, so this session will also focus on different methods of pregnancy avoidance in PH. The session is meant to be interactive so bring your questions!
*These sessions have been recommended for long-term PH patients
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Changing to Different PH Medications: Important Things to Know Before, During and After
Chair: Kelly Chin, MD, University of Texas - Southwestern Medical Center, Dallas, Texas
Panelists: Traci Housten, RN, MS, Johns Hopkins University, Baltimore, Md.; Terence Trow, MD, Yale University School of Medicine, New Haven, Conn.; Debra Zupancic, FNP BC, University of Colorado Hospital, Aurora, Colo.
The goal of this session is to discuss how to optimize medical therapy for pulmonary arterial hypertension. Changes in therapy are usually considered when therapeutic goals are not reached or when medications are causing difficult side effects. Changes are also sometimes considered for other reasons, such as a desire to change route of delivery or to take fewer treatments per day. In these situations, we will discuss ways in which this may be accomplished and the monitoring that is often required before and after the changes are made.
Combination Therapy in PAH
Chair: Harold Palevsky, MD, Penn Presbyterian Medical Center, Philadelphia, Pa.
Panelists: Wendy Hill, MSN, RN, NP-C, VA Greater LA Health Care System / University of California, Los Angeles, Los Angeles, Calif.; Zeenat Safdar, MD, Baylor College of Medicine, Houston, Texas
The goal of this session is to discuss how combination therapy is used in pulmonary arterial hypertension (PAH). The specific focus will be how drugs are chosen for patients with PAH, and the rationale for, and timing of adding more PAH medications. The concept of “goal-oriented therapy” will be discussed.
Infused Prostacyclins – Present and Future
Chair: Myung Park, MD, University of Maryland Medical Center, Baltimore, Md.
Panelists: Louise Durst, RN, Mayo Clinic, Rochester, Minn.; H. James Ford III, MD, University of North Carolina School of Medicine, Chapel Hill, N.C.; Veronica Franco, MD, MSPH, Ohio State University Medical Center, Columbus, Ohio
Prostacylins are among the most potent and effective treatments for patients with advanced pulmonary arterial hypertension. However, there are unique challenges and potential complications of these therapies, mainly related to their delivery systems. This session will review currently available infused prostacyclin therapies, pros and cons of different modes of infusion systems, as well as their unique side effects. Emerging prostacyclin therapies will also be discussed.
Inhaled Therapies for PAH
Chair: Martha Kingman, FNP-C, DNP, University of Texas - Southwestern Medical Center, Dallas, Texas
Panelists: Vinicio de Jesus Perez, MD, Stanford School of Medicine, Stanford, Calif.; Abby Poms, RRT, Duke University Medical Center, Durham, N.C.; Robert Schilz, DO, PhD, Case Western Reserve University School of Medicine, Cleveland, Ohio
The goal of this session is to discuss how inhaled therapies are used to treat some patients with pulmonary arterial hypertension (PAH). An overview of the two FDA- approved inhaled prostacyclins will be provided, along with a discussion of appropriate patient selection and management of side effects.
Oral Treatments: PDE-5 Inhibitors, ERAs, sGC Stimulators and Oral Prostacyclins
Chair: Jeffrey Sager, MD, MSc, Cottage Pulmonary Hypertension Center, Santa Barbara, Santa Barbara, Calif.
Panelists: David Badesch, MD, University of Colorado, Denver, Aurora, Colo.; Anna Hemnes, MD, Vanderbilt University Medical Center, Nashville, Tenn.; Ivan Robbins, MD, Vanderbilt University Medical Center, Nashville, Tenn.
The development of oral therapies for pulmonary arterial hypertension (PAH) is a major breakthrough in this disease. Prior to 2001, the only available PAH-specific therapy was intravenous epoprostenol. This session will review phosphodiesterase inhibitors, endothelin receptor antagonists, soluble guanylate cyclase stimulators and oral prostacyclins. Panelists will review these drugs’ roles in the treatment of PAH and how novel oral agents are being developed which will further advance the field and hopefully improve long-term outcomes in patients who suffer from PAH.
Surgical and Interventional Therapies for PH
Chair: Deborah Levine, MD, University of Texas Health Science Center at San Antonio, San Antonio, Texas
Panelists: Reda Girgis, MD, Spectrum Health Medical Group, Grand Rapids, Mich.; Melissa Taylor Israel, PA-C, University of Texas Health Science Center at San Antonio, San Antonio, Texas; Michael McGoon, MD, Mayo Clinic, Rochester, Minn.
The goal of this session is to discuss surgical and/or interventional therapies that may be performed in particular patients with pulmonary hypertension (PH). Therapies to be discussed will be atrial septostomy, pulmonary endarterectomy, lung transplantation and heart-lung transplantation. This session will specifically focus on the description of these procedures and how and when they are performed in patients with PH.
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Future of PH/Research
Investigational Therapies and Stem Cell Research in PAH
Chair: Raymond Benza, MD, Allegheny General Hospital, Pittsburgh, Penn.
Panelists: Vallerie McLaughlin, MD, University of Michigan Health System, Ann Arbor, Mich.; Michael Passineau, PhD, Allegheny General Hospital, Pittsburgh, Pa.; Namita Sood, MD, Ohio State University Medical Center, Columbus, Ohio
The goals of this session are to provide a forum to discuss how new drugs designed to treat pulmonary arterial hypertension (PAH) are evaluated and proven effective prior to their release to the public, and also to provide a layperson’s overview of gene and cell therapy for PAH with special emphasis on how these later therapies are applied to the pulmonary circulation. Specific foci of discussion will foster an appreciation and understanding of how drugs in development will complement the currently approved therapies for PAH and what the therapeutic potential and current limitations of gene therapies currently are. While few gene and cell therapy clinical trials have yet been undertaken for PAH, these technologies have shown promise in other diseases. We will conclude with an overview of translational research now underway in PAH, and a discussion of timelines to clinical trials for select gene and cell therapy strategies.
PAH Drug Development and Clinical Trials
Chair: Mardi Gomberg-Maitland, MD, MSc, University of Chicago, Chicago, Ill.
Panelists: Bruce Brundage, MD, David Geffen School of Medicine, Los Angeles, Calif.; Oksana Shlobin, MD, Inova Fairfax Hospital, Falls Church, Va.; Roxana Sulica, MD, Beth Israel Medical Center, New York, N.Y.
Clinical trials in pulmonary arterial hypertension have led to the FDA approval of eleven medicines over the past 18 years. During this session, the panel will provide an overview of how drugs are developed and how new drugs may impact drug selection for each individual patient. Experienced researchers will provide a general overview of the clinical trial process, including the benefits and potential risks patients may face. The goal of this session is to discuss how new drugs in development will impact treatment for the individual patient. The panel will give insight on newly approved therapies and current investigational trials. Specific focus will be on the role of new therapies, the need for new trial designs, and the importance of participation in new clinical trials for therapies, management strategies, and genetic study.
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Ask a Pediatrician – For Parents of Infant–11 Year-Old Patients
Chair: Dunbar Ivy, MD, Children's Hospital Colorado, Aurora, Colo.
Panelists: Michelle Cash, MSN, RN, APRN, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Usama Kanaan, MD, Children's Healthcare of Atlanta, Atlanta, Ga.; Mary Mullen, MD, PhD, Boston Children's Hospital, Boston, Mass.
The goal of this session is to discuss the challenges facing infants and children up to age 11 and their families. Specific focus will be on how medications approved for adults may be used “off-label” in children.
Ask a Pediatrician – For Parents of 12–18 Year-Old Patients
Chair: Jeffrey Fineman, MD, University of California, San Francisco, San Francisco, Calif.
Panelists: Beth Coleman, RN, CPNP-PC, Children's Hospital Colorado, Aurora, Colo.; Janette Reyes, RN, BScN, MN (NP), The Hospital for Sick Children, Toronto, ON, Canada; Jackie Szmuszkovicz, MD, Children’s Hospital, Los Angeles, Los Angeles, Calif.
The goal of this session is to discuss the special needs of 12-18 year olds with pulmonary hypertension. Specific focus will be placed on transitioning the pediatric patient to an adult pulmonary hypertension specialist, and the challenges associated with this transition.
Medical Care of the Child with PH
Chair: Stuart Berger, MD, Children's Hospital of Wisconsin, Milwaukee, Wis.
Panelists: Steven Walker, MS, RN, CRNP, Children's Hospital of Philadelphia, Philadelphia, Pa.; Delphine Yung, MD, Seattle Children's Hospital, Seattle, Wash.
This session will describe how medications for adults are being used in children with pulmonary hypertension (PH). Panelists will discuss the challenges of studying therapies in pediatric PH populations, the classifications of PH, the rationale for which medications are used in different circumstances, and genetic contributions to PH.
Surgical Problems for Children with PH
Chair: Delphine Yung, MD, Seattle Children's Hospital, Seattle, Wash.
Panelists: Jane Devereux, RN, Columbia University Medical Center, New York, N.Y.; Marry Mullen, MD, PhD, Boston Children's Hospital, Boston, Mass.; Jackie Szmuszkovicz, MD, Children’s Hospital, Los Angeles, Los Angeles, Calif.
The panel with highlight various issues around anesthetics and processes when pediatric pulmonary hypertension patients undergo surgical procedures. The session will cover common surgical procedures, what questions to ask prior to surgery and how to prepare for recovery.
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