Understanding Your Role Education for patients and caregivers

Disclaimer This presentation is sponsored by and being made on behalf of United Therapeutics Corporation (UTC) The presenter of this program is compensated by UTC This program is provided for informational purposes and not intended as treatment advice Patients should talk with their own healthcare practitioner to determine an appropriate care and treatment plan

Empowerment Through Education Knowledge is power Learn how to manage your disease Learn your treatment options Empower yourself Take an active role in your treatment Communicate effectively with your physician Connect with others Involve your loved ones and friends Join a support group or chat room

How Can You Manage Your Disease? A LOT you can do Healthy diet Control salt and fluid intake Exercise Control your weight Stay up to date on PAH developments/treatments Know all your medicines Adequate rest and sleep

Be an Advocate for Yourself Choose a physician who specializes in PAH Know your disease Know your medicines Don’t be afraid to ask questions

Effective Communication With Your Doctor Is Critical Bring your caregiver or loved one Bring a list of questions to your appointment Bring your list of medications and doses Take notes during your appointments Be honest about how you are feeling

Understand Your PAH Treatment Options Oral Medications Taken by mouth May be taken alone or with other PAH medications Inhaled Medications Breathed directly into the lungs multiple times a day Infused Medications Continuously infused into the body Delivered through a tube and a pump device (under the skin or into a vein)

What to Know When Choosing a Therapy If I choose this therapy What might happen to me? What are the benefits? What are the risks? How may it impact my family, career, and life? Do I have alternatives?

Monitor Your Disease to Track Your Progress How do you feel compared with when you started your therapy? Better Worse Same How has your activity level changed since your last visit? Remember to visit LivingPAH.com for tools and resources that can help you track your progress

When to Call Your PAH Doctor? You’re not sure about something regarding your medication You develop new or worsening symptoms or side effects

What to Tell Your PAH Doctor? Be specific in communicating your symptoms Weight gain of ≥ 2 lbs/1 day or 3 lbs/3 days New or ↑ swelling (legs, feet, or abdomen) New or ↑ shortness of breath ↑ or ↓ urine output ANY dizziness or fainting ↑ in generalized fatigue New or ↑ palpitations/heart fluttering Chest pain Any feelings of depression and/or anxiety

Caregivers New Responsibilities Emotional Challenges

Caregiving: a Balancing Act Caring for my loved one Caring for me Not knowing if I can handle my loved one’s care in the future Being available 24 hours a day Feeling responsible for my loved one’s care and well-being Social, recreational, and career activities Maintaining healthy lifestyle

Caregiver Concerns Concerns Feeling helpless Watching my loved one become more ill Loss of social, recreational, and career activities Feeling helpless Unable to share concerns with my loved one Feeling like my loved one is not the person he/she once was

Caregivers Must Take Care of Themselves First to Be Good for Others Adequate sleep Regular exercise Healthy eating habits Share responsibilities by accepting help from others Physical well-being Leisure/Rest time Continue hobbies Time when completely “off call” Have someone to talk to (professional help) Maintain friends Emotional well-being

Visit LivingPAH.com to access more resources A Resource for You Living PAH is a source of PAH information, tools, and support for patients and caregivers Living PAH provides PAH disease education and treatment information Tools and resources, including low-sodium recipes from the Living PAH Kitchen Lifestyle tips from other PAH patients Visit LivingPAH.com to access more resources

Summary Knowledge is power Become your own advocate Be involved in managing your disease Tell your doctor when you don’t feel well Be specific when describing your symptoms Communicate effectively with your doctor Know your treatment options Monitor your disease Continuously assess your progress Understand the caregiver’s perspective Keep up the fight and the hope Connect with others

Thank You