Pulmonary Hypertension and Lung Transplantation A 5-Year Journey - - PowerPoint PPT Presentation

4/20/2018 1

Pulmonary Hypertension and Lung Transplantation

A 5-Year Journey Michelle Ferdinand Liu, MD, MPH

Parent and Caregiver PHA Support Group Leader, DC/NoVA The views in this presentation are those of the presenter, Dr. Michelle Liu, and do not reflect the official policy of the US Navy or the Department of Defense. 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

4/20/2018 2

Surviving the PH Diagnosis

• What limitations?
• School?
• Central Line/Complex Meds
• Uncertain Future?
• Advocacy?
• Support

Be Transparent Explore the Options Give Hope

Patients deserve it Parents depend on it Encourage parents to be open with their children about everything

Communicating with PEARLS

Recognize and respond to emotions

Partnership Empathy Acknowledgement/Apology Respect Legitimization Support

Thriving as a State of Mind

• Let them live
• Time
• Quality
• Make-A-Wish

4/20/2018 3

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"
• Nissen fundoplication?

Double Lung Transplantation 21 July, 2014

Week 1 Challenges

"An Ounce of Prevention is Worth a Pound of Cure"

Haney and Hartwig, "Nissen Fundoplication and Lung Transplantation." ISHLT vol 5 (6), 2013.

One Year Later…

4/20/2018 4

Try Everything

Questions?