Living with Li Fraumeni as a Young Adult: Managing your healthcare - PowerPoint PPT Presentation

Living with Li Fraumeni as a Young Adult: Managing your healthcare Yelena Wu, PhD Yelena.Wu@utah.edu

Plan for our time together • Managing your medical care for LFS now and later – Your goals – Taking charge & working with your team • Guidelines for parents and family members – Taking care of yourself • Parent & Teen sessions later on today – Hands-on activities and discussion

Living with LFS as a young adult: Medical management • Frequent medical appointments • Blood work • Ultrasounds • Brain and body imaging • Cancer treatment – Radiation – Chemotherapy – Surgery

• Frequent medical appointments • Blood work • Ultrasounds Why do all • Brain and body imaging this? • Cancer treatment – Radiation – Chemotherapy – Surgery Your personal goals and helping you reach your goals

What are your personal goals and interests? • How do you want your life to look? • What do you want to see happen in the next year? – In the next 5 years? – Beyond the next 5 years? • How does LFS fit with those goals?

Taking charge and working with your team so that you can accomplish your goals

What do we mean by: “Taking charge” • Sometimes referred to in the scientific & medical communities as “Transition” – Transition from pediatric to adult provider – Transition from parents/caregivers managing your care to you (the patient) managing more of your care

Taking charge • Keeping track of your medical information – Medical summary • Emergency plan

Taking charge (continued) • Medical visits – Making (& rescheduling) appointments – Think about questions to ask your providers – Be able to answer your providers’ questions – Ask questions about your medical care – Knowing where to go for appointments/blood work/scans and how to get there • Managing medications – Taking them – Refills – Keeping track of side effects & communicating with providers about them

Who is on your team? • Often differs between people • Changes over the course of your life

How to work with your team • Talk with your team members about your goals and your concerns – Including your ‘taking charge’ goals • Make a plan for how to take steps towards your goals • Decide when and how to evaluate progress

Suggestions for parents and caregivers • Please Do • Please Don’t – Have conversations about – Do it for them health habits and managing medical care – Focus only on your concerns for their health – Ask them to go with you to fill prescriptions – Support them when they call a provider for the first time – Remind them about the skills they are learning – Check in with them before and after appointments – Give them time alone with their provider – Let them raise their own health Adapted with permission from Dr. concerns at visits Sarah Beal, Cincinnati Children’s Hospital

Self-care

Coping with stress • Stress is part of everyone’s life – Stress can be “good” too! • Self-care helps us cope with stress – Especially important when one has a chronic health condition • Activities to reduce stress and maintain and enhance short- and long-term health and well- being University of Buffalo School of Social Work

How can you take care of yourself? • Think about what self-care activities you enjoy – Reading a book – Exercise – Hanging out with friends – Listening to music – Writing in a journal – Something else? • Make time for these activities • Seek support from mental health professionals • Dr. Kratz’s talk later today on healthy lifestyles

Summary • Set your own goals – How does managing LFS fit with these goals • Take charge – Medical management – Work with your team • Regular self-care • Let’s continue the discussion later!

Acknowledgements • LFS Association • Kelsey Zaugg • Wendy Kohlmann

Additional resources • www.gottransition.org • Short video by Nemours healthcare system on transition from pediatric to adult care: https://www.youtube.com/watch?v=cjXurYrF MZM • Self-care TED talks: https://www.ted.com/playlists/299/the_impo rtance_of_self_care