1. Understanding Your Role
Education for patients and caregivers

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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)

8. 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?

9. 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

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

11. 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

12. Caregivers
New Responsibilities
Emotional Challenges

13. 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

14. 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

15. 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

16. 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

17. 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

18. Thank You