Patient/Family Led Sessions
Patient/Family Led Sessions provide pulmonary hypertension patients and their family members an opportunity to share their tips for managing the disease. These sessions feature patients and family members leading practical panel discussions to help you improve your quality of life in spite of pulmonary hypertension. These sessions will take place in the afternoon on Friday, June 20.
*All speakers, topics and meeting groups are subject to change.
An Explanation of Insurance Benefits
Panelists: Doug Taylor (Chair); Caring Voice Coalition representative
Medical treatment and prescription drugs can be expensive. Understanding the benefits available under your insurance is important to maximizing your coverage and knowing the options available to pay for your needed services. Listen as PH patients and caregivers, along with an insurance specialist from Caring Voice Coalition, share tips to help you make the most of your insurance. You'll also get a brief overview of resources available to help you defray the cost of pulmonary hypertension treatment.
Are You Surviving or Living?
Panelists: Ryan Juntti (Chair); Frances Nelms; Nicole Strafford
Is your everyday routine controlled by pulmonary hypertension? Are you frustrated by tasks that you think take too long or are too difficult now that you have PH? Making practical changes can make a big difference in your day-to-day life. Join us as we share simple steps, tips and tricks that can make a positive impact on living your life well instead of just surviving.
Can You Hear Me Now? Communicating about PH
Panelists: David Grady (Chair); Mark Gerber, MD; Elisa Lipnick
Do words escape you when it comes to talking about pulmonary hypertension with your family, friends, or even your doctor? Do family and friends just not ‘get it’ when you try to explain what you face? Do you ever feel after a doctor's appointment that you didn't understand or remember what was said? Join us to learn the benefits of good communication and how to achieve it.
Living in the Present: Making the Most of Today
Panelists: Kiara Tatum (Chair); Kaye Norlin; Chloe Temtchine; Barbara Thompson
Living in the present helps us cope with the emotional difficulties of chronic illness, loss of normal activities, and understanding and accepting our new normal. As survival rates increase, patients also must come to terms with the loss of PHriends. Making the most of what we can do emotionally and spiritually complements our medical therapy. Panelists and attendees will share how they focus on living in the present.
Mouthwatering Good: Eating Great with PH
Panelists: Colleen Brunetti (Chair); Julia Feitner
Patients are often told, "Eat a low-sodium diet and try to maintain a healthy body weight." That can be hard to implement without more guidance! Many of us know what not to eat, but what can we eat? We will cover things like eating more while consuming fewer calories, cooking once and eating twice (or more!), low-sodium recipes that actually taste good and eating well on a budget. Learn some mouthwatering strategies and get some recipes to take home!
Navigating Work and Pulmonary Hypertension
Panelists: Stacey Gausling (Chair); Caroline Clemens; Ornah Levy, Esq.
Our jobs and careers make up such a large part of our identity, and few of us want to give them up. Or maybe you can't give them up because of the need for income and access to health insurance. Find ways to continue working while maintaining your health. In this session we will discuss how pulmonary hypertension patients manage to work and take care of themselves.
PH Goes Social: Friendships and Dating
Panelists: Perry Mamigonian (Chair); Becca Atherton; Tiffany Gunderman
Socializing and dating (or just hanging out) doesn't have to be sacrificed just because you have pulmonary hypertension. Enjoy spending time and having fun with friends who will accept and respect your limitations. Hear how the panelists have addressed developing and maintaining relationships and share your own tips.
Planes, Trains, Boats and Automobiles
Panelists: Carol Bowling (Chair); Ann Arnott; Monica Penaranda
Whether your travel is for business, pleasure or medical necessity, getting there is as important as what you do after you arrive. Travel with pulmonary hypertension can be a challenge, but with planning you don't have to give it up. Tips from this session will help you minimize the hassles and get the most out of your travel.
Caregiver Focused Sessions
PH is Relative: Coping as a Family Member Affected by PH
Panelists: Ian Morrill (Chair); Eric Heineman; Rachel Stecklein
Pulmonary hypertension affects everyone in the family. Come to this session for tips on keeping your family relationships strong – whether you're focusing on your marriage, your relationship with an adult sibling or parent who has pulmonary hypertension, or you want to help your children cope with their parent’s diagnosis.
The Caregiver’s Guide to Surviving Pulmonary Hypertension
Panelists: Bonnie Patricelli (Chair); Cindy Battiato; Rich Bottini
With medications, errands, pharmacy calls, meals, and everything in between, who can keep up? This session will focus on the pulmonary hypertension caregiver. Hear from experienced caregivers about juggling all the balls in the air while finding ways to manage the stress of caregiving, and share your own thoughts about surviving as a caregiver.
Parenting Focused Sessions
Let Your Light Shine Bright: Helping your family and Your Young PH Patient Cope
Panelists: Billie Jo Thompson Keith (Chair); Josh Belt; Lindsey Belt; Regina Maddox; Jayna Wall; Matt Wall
Living with a pulmonary hypertension diagnosis as a child can be challenging. Parents will discuss coping methods for kids of all ages. Learn how you can empower your child to live positively with pulmonary hypertension.
Ready, Set, Succeed: Working with Schools
Panelists: Mitzi McIver-LaBarge (Chair); Teresa Myers; Manny Rodrigues
Health Plans, I.E.P.s, and 504s are designed to meet your child's needs from pre-K to college. Parents of kids with pulmonary hypertension will discuss how to collaborate with your school to ensure your child's academic success in a safe environment.