4/20/2018 Pulmonary Hypertension and Lung Transplantation A 5-Year Journey Michelle Ferdinand Liu, MD, MPH The views in this presentation are those of the presenter, Dr. Michelle Liu, Parent and Caregiver and do not reflect the official policy of the US Navy or the Department of Defense. PHA Support Group Leader, DC/NoVA Furthermore, Dr. Liu has no affiliations or conflicts of interest to disclose. Credit Shakira for Try Everything , video theme song. Patient and Family-Centered Care • What is the goal? • What are the needs? • Communication • Child Life Specialist • Therapy/ Support • Case Management 1
4/20/2018 Surviving the PH Diagnosis Be Transparent • What limitations? Explore the Options Give Hope • School? • Central Line/Complex Meds Patients deserve it • Uncertain Future? Parents depend on it • Advocacy? Encourage parents to be open • Support with their children about everything Communicating with Thriving as PEARLS a State of Mind Recognize and respond to emotions • Let them live Partnership • Time Empathy Acknowledgement/Apology • Quality Respect Legitimization • Make-A-Wish Support 2
4/20/2018 Decision for Transplant • Differences of opinion regarding indication • Transfer of care when necessary • How does it affect prognosis? • Timing? • Risk? • The "punch in the gut" Double Lung Transplantation 21 July, 2014 • Nissen fundoplication? "An Ounce of Prevention is Worth a Pound of Cure" One Year Later… Week 1 Challenges Haney and Hartwig, "Nissen Fundoplication and Lung Transplantation." ISHLT vol 5 (6), 2013. 3
4/20/2018 Try Everything Questions? 4
Recommend
More recommend