Download - PHA Patient Self-Advocacy Toolkit

PATIENT SELF-ADVOCACY

The Patient Self-Advocacy Toolkit is a project of the Pulmonary Hypertension Association’s Early Diagnosis Campaign.The Patient Self-Advocacy Toolkit is a resource of the Pulmonary Hypertension Association’s Early Diagnosis Campaign.

P a t i e n t S e l f - A d v o c a c y T o o l k i t | 1

Copyright © 2015 Pulmonary Hypertension Association

Pulmonary Hypertension is a rare, hard to diagnose illness, and many of our patients experience periods of uncertainty preceding their diagnosis. PHA understands the frustration, fear and uncertainty that come with having an undiagnosed illness or unexplained symptoms, and wants to help.

This Toolkit has been designed to help you be your own best advocate as you navigate the complex and sometimes difficult road to diagnosis. We'll show you how to speak up for yourself, how to ensure that your perspective is heard and that your questions are answered, and how to take control of your healthcare journey.

WHO is this Toolkit intended for?

The Patient Self-Advocacy Toolkit is intended for anyone facing unexplained symptoms and/or an undiagnosed illness. While this Toolkit was designed for you - the patient - your family and friends might find it helpful as well.

WHAT can I expect from this Toolkit?

This Toolkit will provide you with strategies, tips and best practices to help you advocate effectively. It also includes forms and worksheets that you can use to keep track of your important health information. We hope that it becomes a "go-to" resource for you - and maybe even your healthcare team.

HOW should I use this Toolkit?

We recommend that you read through as much of the Toolkit as possible. We've provided printable versions of useful forms and worksheets which you can take with you to your healthcare appointments.

Table of Contents

2 Be Organized

3 Be Informed

6 Be a Partner

9 Be Sure You’re Covered

10 Be in Control

Forms and Worksheets

Highlights key points and takeaways

801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004

www.phassociation.org

Learn more about PHA’s Early Diagnosis Campaign at: SometimesItsPH.org

http://www.phassociation.org/



Be Organized:

Organizing your medical information is always a good idea, and can help you and your loved ones access critical information in an emergency. Good records will also help to ensure that you and your healthcare team have all the information needed to manage your care.

We’ve prepared the forms below to help you capture your most important health related information. You can find these print-ready forms and worksheets at the end of this Toolkit.

Medical Information Summary: Use this document to summarize your personal information, emergency contacts, medications and essential health information.

Healthcare Contact List: This form will help you keep track of all of your healthcare providers’ information in one place. Share this list with your primary care provider and any specialists you see so they can keep each other informed about diagnoses, changes to your health, procedures and test results.

Medication Log: Use this form to record all medications you take, both prescribed and over-the-counter medications. Note why each medication was prescribed or recommended - even herbal supplements and vitamins. Be sure to update this list every time you start or stop a new medicine. Include medicines you have stopped taking in the last year.

Insurance Information Form: Use this document to keep a record of your current healthcare insurance information.

Family History Record: Family history can be useful in helping your healthcare team identify conditions for which you may be at risk. Use this worksheet to record important medical information about your closest blood relatives.



Be Informed:

Are you turning to the best resources for your healthcare and medical information? Finding the information you need to be an educated and empowered patient can be a challenge, and many people find the sheer volume of information available to be overwhelming.

The materials and resources in this section are designed to help you evaluate the quality of the information you find online and to help point you in the right direction.

Finding Credible Healthcare Information Online

Thanks to the internet, you have access

to more “information” than ever before,

but is all this information credible?

Sometimes, it’s hard to know.

Information is only as good as its source, and differentiating “good” from “bad” information is sometimes a matter of judgment. Data, opinions and recommendations can vary – even among credible sources. The following questions will help you critically evaluate the healthcare information you find online.

Where is the information or data being

presented?

What does the “About Us” page tell you about the organization’s mission and objectives?

What is the purpose of the site? Who is the site intended for? How might funding influence the research or

other information presented on the site?

Is the source credible?

Ask yourself if the information you are reading is likely to be unbiased, balanced and without hidden motives. Here are some particular points to consider:

Who are the authors of the information or data presented?

Do they have appropriate expertise? Can they “speak” with authority? What are their credentials?

Is the data or information based on research and scientific evidence? If yes, can you determine who funded the research? Were articles peer reviewed?

Can you differentiate between opinions and facts?

If the site is presenting content collected from other sources, have they identified the original sources?

Is the data current? If the information doesn’t match other research

on the topic, is it supported by multiple credible sources?

What can a website address tell you?

A website address can tell you a bit about the organization that owns and operates the website.

".edu:" Published by an organization affiliated with an educational institution

".org:" Published by a not-for-profit organization, such as the Pulmonary Hypertension Association

".gov:" Indicates that the website is run by a government agency

".com:" Generally means the site belongs to a commercial or for-profit organization

Are there any red flags?

Sometimes, it’s good to be a skeptic – especially if you see these warning signs:

Lack of appropriate expertise or credentials Data that seems biased or in conflict with

the credible research Data that is outdated Information that seems too good to be true Overt product sales pitches “Facts” with no references



Seeking a Second Opinion

Sometimes it takes a fresh pair of eyes to see a situation in a new way. Second opinions can help you make more informed decisions and to take greater control of your healthcare journey.

Decisions about your healthcare are among the most important you'll ever make, and it's natural to want to have as much information as possible. Still, many of us worry about offending our doctors or health team by asking for a second opinion. Rest assured, most healthcare professionals will understand your desire to be well informed and will support your desire to get a second opinion. Many will even be happy to help you get one. When you ask for a second opinion (or third), you are simply asking for another perspective on your health issues and options. This makes you a more informed consumer.

Why and When Should You Seek a

Second Opinion

Requesting a second opinion doesn’t mean you don’t trust your doctor. Here are some reasons you may want to consider getting a second opinion:

Based on their training, diagnostic tools, and experience, healthcare professionals may have varying approaches to diagnosis. When faced with a hard-to-diagnose condition, it may become necessary to consult a variety of specialists.

No two healthcare providers have the exact same approach. They may apply different types of treatment approaches and styles. Some favor more "wait and see" conservative approaches, while others prefer a more aggressive strategy. By seeking a second opinion, you increase your understanding of the options available to you.

Talking to Your Healthcare Team about Getting a Second Opinion

Telling your healthcare team that you would like to seek a second opinion might be uncomfortable, but don’t let that hold you back. After all, it's your health that's at stake. Here’s what you should do when asking for a second opinion:

Be honest: Don’t hide your desire or intent to get a second opinion. Your healthcare team may be able to recommend specialists and may even be able to coordinate the sharing of your medical records.

Be respectful: Keep in mind that, like you, your healthcare team is committed to your health – you are all part of the same team. Getting a second opinion shouldn’t be seen as severing ties, so manage the process diplomatically.

Be clear and direct: Explain that getting a second opinion is important to you, and will enable you to feel confident about the decisions you’ll be asked to make about your healthcare.

For Example: “Dr. Smith, it’s important to me that I feel as informed as possible. This will help me feel more confident in making the decisions you may need me to make. Before we move forward, I'd like to get a second opinion.”

For Example: “Dr. Smith, to ensure that I feel confident in making decisions about my care, I’d like to get a second opinion. Will you give me some suggestions on who you would recommend I see outside your practice? And, can your team help me share my medical records?”

For Example: “Dr. Smith, I appreciate the time you and your staff have spent with me. I am still a little overwhelmed, and I think I need another opinion to ensure that I feel fully informed. ”



Getting the Most from Your Second

Opinion

Be organized: Organization is critical. Use the tools in the “Be Organized” section of this Toolkit to ensure that you are well prepared for each appointment.

Be covered: Dealing with unexplained symptoms or an undiagnosed illness means you live with surprises every day. Don’t let unexpected bills or insurance conflicts be one of them! Review the “Be Covered” section of this toolkit to ensure you understand the insurance related aspects of getting a second opinion.

Follow-up: Whenever you get a second opinion, be sure to have the office send a report to your primary care physician and/or the person who provided you with the initial opinion. This will ensure that all of your healthcare providers have the same information.

Once you have received your second opinion, review it with your primary care provider and/or the person who provided you with the initial opinion. When healthcare providers are in agreement, your decisions become more straightforward. When they disagree, you may need a third opinion or may want to discuss your situation with a different type of specialist.

ADDITIONAL RESOURCES

There is no shortage medical information online, and it can be hard to know where to begin when you have unexplained symptoms or an undiagnosed illness. These sites may help you get started:

US Department of Health and Human Services Health Finder, US Department of Health and Human Services,

MedlinePlus Guide to Healthy Web Surfing, US National Library of Medicine

NIH Undiagnosed Diseases Program, National Institutes of Health

National Organization for Rare Diseases, NORD

So, you’ve made the decision to get a second opinion. Now what? Deciding what type of specialist to consult and deciding who to actually call are important decisions. In addition to speaking with your healthcare provides, these resources will help you find your way.

Choosing a Doctor or Health Care Service, US Library of Medicine, National Institute of Health

Find and Compare Doctors, Hospitals & other Providers, Medicare.gov

How to Find Health Care Provider Information, Healthcare.gov

How to Find a Disease Specialist, National Institute of Health, Office of Rare Disease Research

Specialty Definitions, US Site for Medicare

http://www.healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases

http://www.healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases

http://www.nlm.nih.gov/medlineplus/healthywebsurfing.html

http://rarediseases.info.nih.gov/research/pages/27/undiagnosed-diseases-program

http://www.rarediseases.org/

http://www.rarediseases.org/

http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareservice.html

http://www.healthcare.gov/choose-a-plan/find-provider-information/

http://rarediseases.info.nih.gov/resources/pages/25/how-to-find-a-disease-specialist

http://www.medicare.gov/physiciancompare/staticpages/resources/specialtydefinitions.html



Be a Partner in Your

Care

You probably advocate for yourself everyday - at school, at work, at home. No matter where you are, you won’t get ahead without speaking up. As a patient, it is important for you to advocate for yourself, which means making sure your needs, perspectives and goals are heard.

In the healthcare environment, you advocate for yourself best when you are prepared, informed, collaborative and assertive. This section of the Toolkit contains tips and strategies to help you partner effectively with your healthcare team.

Preparing for Your Visits

You are a busy person, and so are the healthcare professionals you will meet. You deserve to get the very most out of the limited time you have together, whether you are seeing your primary care practitioner or visiting a new specialist for the first time.

It may be tempting to just wing it, but spending time preparing for your medical visits will ensure you don’t forget to ask important questions. Likewise, taking notes during and after your visits will help you remember key points from your discussions. The forms below will help you keep track of questions and concerns in advance of your visits, and to help you track your visits and follow-up questions.

Appointment Prep Worksheet: Use this worksheet to prepare for each appointment by summarizing any changes you've noticed since your last visit. Use the space provided to capture any questions you'd like answered during the appointment.

Appointment Summary Worksheet: Review this worksheet with your healthcare providers at the conclusion of each appointment to ensure that you understand important instructions and treatment plan changes. Keep copies of each summary

worksheet so you have a detailed and accurate record of your healthcare history.

Describing Your Symptoms

Symptoms are the clues your healthcare team will use to decode your health. What you think may be unimportant or just a coincidence, could be the missing piece that leads to your diagnosis. Diagnosing an illness - particularly one that is hard to diagnose like yours - is a complex process that requires a partnership between you and your healthcare team. It’s important to keep in mind that diagnosis is sometimes a process of exclusion, which means you may find out what isn’t wrong long before you find out what is!

Your healthcare provider may use of a variety of diagnostic methods including algorithms, pattern recognition and hypothesis testing. Regardless of the approach, your healthcare team will need your help. Specifically, your team will count on you to describe symptoms effectively and to be honest about your personal and medical history.

You need to be able to describe your symptoms in order to make sure your medical team has all the information they need to help you. Your first step is to track your symptoms, which you can easily do using our Symptoms Tracker.

Keep in mind that how you describe those symptoms is critical to your healthcare professionals’ ability to accurately diagnose your condition. When you are describing your symptoms be sure to:

Start at the beginning and discuss your symptoms chronologically

Be specific about when, where, how often the symptom occurs, how long they have been occurring and how they have changed over time.

Describe how the symptoms feel, using specific descriptions (ex: “It feels like someone has put a weight on my chest” or “I have to gasp for air and feel like I am going to suffocate.”).

Use your own words. You may think you know what words the doctor might want to hear, but using "medicalese" may create more confusion than clarity.



Describe what, if anything makes the symptoms better or worse. Note if you have been able to associate your symptoms with any events or changes in your lifestyle or situation.

Disclose if you are being treating for any conditions, what medications (including non-prescription) you are taking, or if you have had any recent medical or dental procedures.

Describe how the symptoms impact your daily life and activities – be specific (ex: “I can no longer walk up the stairs every time the baby cries, so now the baby naps on the first floor.” or “I have to rest after I walk from my car to the office, which creates problems for me at work.”)

Be concise: The average medical appointment lasts less than 15 minutes.

Most importantly, be honest. Now is not the time to be shy! The ability of your healthcare team to make an accurate diagnosis is dependent having all the information you can provide – even when it’s embarrassing.

Communicating with Your Healthcare Team

Your relationship with your healthcare team is a two way street. Just as they need you to provide information about your symptoms and medical history, you need them to explain the steps they are taking to diagnose your illness and any recommendations they make.

Meeting a Provider for the First Time

You wouldn’t hire a new babysitter or a contractor without an interview, and not every healthcare professional's style of care will suit you as a patient.

Always take the time to ask questions of a new provider to make sure you’ll be comfortable with them and their approach to care.

Ask about their approach to diagnosis: What can you expect?

Ask about their practice: What types of conditions do they typically treat? What experience do they have with difficult to diagnose conditions?

Ask about their communication preferences and channels: Can you reach them via email or phone? What can you expect in terms of response time?

Tips for Getting the Information You

Need

These tips can ensure you get the information you need and help to build a solid partnership with all of your healthcare providers:

Ask for an explanation of any tests ordered: What is the test and what can you expect before, during and after? Do you need pre-authorization? What will the test tell them?

Ask when and how you can expect to receive test results: Will the office call you? Will results be sent to your primary care practice? Will you receive a written report?

Ask for explanation of any treatment, lifestyle change or medication recommended: Why have they made the recommendation? Are the possible side effects? Will you need pre-authorization?

Ask what to do or what you should expect next: When should you schedule your next appointment?



Tips for Maximizing Your Appointment

Time and Ensuring You Feel Heard

It is critical that you feel heard in your interactions with all of your healthcare providers. Here are a few tips to ensure you communicate effectively, as well as tips for what to do if you don’t feel heard. Following these steps will also help you make the most of your appointment time.

Be prepared: Preparing for your appointment in advance will help ensure you are able to share all the important information with your doctor.

Prioritize your concerns and be specific: Like you, your providers are very busy and may not have a lot of time to spend with you. Discuss your most significant concerns first and be specific. If you are interrupted before you finish discussing your concerns, politely ask that you be allowed to finish.

Clarify what you hear: Ask for an explanation

of any term or word that you do not understand. Slow things down: If things are moving too

fast - maybe you don't fully understand what you are being told or you haven't been able to fully describe your concerns - ask for more time.

Be insistent if it feels like your provider

doesn’t understand: You know your symptoms better than anyone else. Keep your symptom tracker current so that you can talk about your symptoms with certainty.

Be direct: If you don’t feel heard, or if you feel that your symptoms are being minimized, say so diplomatically.

Ask. Then, ask again. There are no stupid questions. Don't be afraid to ask questions until you are fully satisfied that they have been answered adequately.


Healthcare terminology is extremely technical and can be difficult to understand. These resources will help to demystify some of terms your healthcare team might use.

Searchable Medical Dictionary, US National Library of Medicine, National Institute of Health

Medical Tests and Procedures, the Mayo Clinic

Understanding Your Medical Tests, American Association of Clinical Chemistry

SUGGESTED READINGS S

Looking for more tips about communicating to your healthcare team? Check out PHA's "From "Me" to "We": Communicating with Your Healthcare Team.

http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

http://www.mayoclinic.org/tests-procedures

http://labtestsonline.org/understanding/

https://www.phassociation.org/edit/5/id/target=From%20Me%20to%20We&pid=5651&did=0&tab=0

https://www.phassociation.org/edit/5/id/target=From%20Me%20to%20We&pid=5651&did=0&tab=0



Be Sure You’re

Covered:

Understanding and

Navigating Health

Insurance

For many of us, navigating the world of insurance can be a challenge. This section will provide you some basic information about insurance and help you anticipate and troubleshoot common insurance-related challenges.

Health Insurance 101

To navigate the insurance system most effectively, it's important to understand the terms and processes used by insurance companies. There are many different types of insurance payers, plans and programs in the US, each catering to different populations with different needs. To learn more about your current or potential insurance plan, visit PHA's Types of Insurance and our Glossary of Insurance Terms pages.

Understanding Your Rights

Navigating the insurance system is not a passive activity. Getting the coverage you need and may be entitled to requires that you understand your rights. Learn more about your rights at PHA’s Understand Your Insurance Rights page.

Tips for Communicating with Your

Insurance Company

Understanding your benefits and knowing your rights are important first steps, but communicating effectively with your insurance company is equally important, and will increase the chances of having your care covered. To learn how to communicate more effectively review our Easy Tips for Communicating with the Insurance Company.

Troubleshooting Common Insurance

Problems

Insurance companies can be particular when it comes to approving treatment and paying claims. If you find that you are facing obstacles accessing treatment and/or using your benefits, don’t wait to take action. Get started now by learning how to manage Common Insurance Problems and Challenges.

Understanding Social Security

Depending upon your situation, you may find yourself working with government health and disability insurance programs. PHA has two great resources that can help:

Medicare Overview Social Security Guide


You don't have to go it alone! There are organizations and online resources that can help you identify financial assistance and provide help related to your insurance and disability related issues. Here are a few:

Caring Voice Coalition offers financial support to eligible patients through its Financial Assistance Program, which may cover all or a portion of a patient’s out-of-pocket expenses.

The Patient Advocate Foundation provides direct financial support to insured patients, including Medicare Part D beneficiaries through its Co-Pay Relief Program. Eligible patients must financially and medically qualify to access pharmaceutical co-payment assistance. The program also offers call counselors who personally guide patients through the enrollment process.

http://www.phassociation.org/Patients/Insurance/Types

http://www.phassociation.org/Patients/Insurance/Glossary

http://www.phassociation.org/Patients/Insurance/Glossary

http://www.phassociation.org/Patients/Insurance/Rights

http://www.phassociation.org/Patients/Insurance/Communicating

http://www.phassociation.org/Patients/Insurance/Communicating

http://www.phassociation.org/Patients/Insurance/FileClaim

http://www.phassociation.org/Patients/Insurance/FileClaim

http://www.phassociation.org/Patients/Insurance/Medicare

http://www.phassociation.org/Insurance/Disability

http://www.caringvoice.org/

http://www.patientadvocate.org/



Be In Control

When you aren't feeling your best and you are

dealing with unexplained symptoms that are

impacting your life, you may wish the world would

just stand still. Unfortunately, it won't. The people

around you - family, friends, and coworkers - will

continue to have expectations of you and may not

understand what you are going through. This

section of the Toolkit has been designed to help you

cope with the everyday challenges you may

face. These tips will help you get on with the

business of living your life.

Managing Your Illness at Work

Dealing with an undiagnosed disease and experiencing unexplained symptoms can affect you on the job, impacting your schedule, attendance or performance. You may already be nervous about your job security. While every workplace is different, here are some common strategies that can help you manage at work.

Understanding Workplace Benefits and

Policies

Take the time to read everything you can about your employer's leave policies and employee benefits. Pay specific attention to:

Time Off Benefits: Review vacation, sick time, paid time off, Family and Medical Leave, unpaid leave and any other leave benefits your employer may offer.

Your Health Insurance Benefits: Be sure you understand what type of insurance plan you have, and what coverage is - and is not - included.

Other Insurance Benefits: In addition to your leave benefits, you may also be eligible for short and longer term disability insurance payments in the event you cannot work.

Your Employee Assistance Program Benefits: Many employers offer employee assistance programs, which may include referral resources, mental health counseling, legal and/or financial advice.

Employee Discount Programs: You may also be eligible for healthcare or fitness related discounts, which might come in handy.

Alternative Work Schedule Options: Find out whether your employer allows alternative work schedules and, if so, under what conditions.

Tips for Talking to Your Employer

When you are sick, but don’t have a diagnosis or prognosis, having discussions with your employer can be difficult. You are not required to tell your employer anything about your health situation. However, if your health condition is getting in the way of doing your job, it might be a good idea. If you do decide to discuss your health with your employer, consider the following tips:

Disclose before you have performance problems. Often people wait until they have received a poor performance rating or review before discussing their health issues with a supervisor. It’s best to have conversations surrounding any potential negative impact on your work productivity before it is noticed by your supervisors.

Consider talking to your human resources representative. He or she may be able to review your company's policies with you, and help you decide whether it's necessary to inform your supervisor. Your employer doesn’t need to know what is wrong with you – your employer just needs to understand what limitations you have that impact your job performance.

Provide appropriate authorizations and required information. Your employer may need to get information from your healthcare providers to administer sick leave, workers' compensation, wellness programs or insurance programs on your behalf. However, your healthcare provider cannot disclose information to your employer without your authorization.



Propose alternatives and be creative. If you are having a difficult time at work, propose alternatives to your employer. While it may seem harsh, your illness is not your employer's problem. You were hired to do a job, and getting it done is your employer’s primary concern. If your health conditions are making it difficult to work your normal schedule or to perform your job as you normally do, you may be able to modify your work schedule or work processes.

Discuss any work related issues you are having with your healthcare provider. He or she may be able to identify work restrictions or accommodations that will help. If you decide to request Family and Medical Leave or to request an accommodation under the Americans with Disabilities Act, your healthcare team will need to provide specific information to your employer.

Understanding Your Rights

As a patient, employee and consumer, you have a variety of protections that can help you access the care and resources you may need as your diagnosis story unfolds. This section of the Toolkit is designed to provide a brief overview of some of the laws and regulations that may be relevant to you. Of course, every individual situation is different and this Toolkit is not intended to provide legal advice.

Health Insurance Portability and

Accountability Act (HIPPA)

HIPPA was enacted to protect the privacy of your health information. In general, HIPPA outlines your right to know about and control how, when and why your health information gets used. This includes the right to get copies of your medical

records and other health information, and generally requires that you provide consent before your health information can be shared. Note that HIPPA generally applies to the information that your healthcare providers and insurers can share, and doesn't prevent your employer from asking you for a doctor’s note or other health information when necessary.

Family and Medical Leave Act (FMLA)

In general, FMLA allows you to take up to 12 weeks of unpaid, "protected" (you can't be fired for taking qualified leave) every 12 months due to your own serious health condition (or that of an immediate family member). Depending upon the need, you may take this leave consecutively or intermittently (i.e., one day a week). It is important to note that not all workers are eligible for FMLA leave and you must demonstrate that you (or your family member) have a certified serious health condition. To learn more, visit the Department of Labor's FMLA page. You may also want to check out the law in your state, as some states require or provide additional leave benefits.

Americans with Disabilities Act (ADA)

The ADA prohibits discrimination on the basis of disability in employment, state and local government programs and in other settings. Depending upon the situation, your health condition may be considered a disability under the ADA. Under the ADA, employers may not ask job applicants about the existence, nature or severity of a disability. Employers may ask you whether you are able to perform the essential functions of a job, but must make reasonable accommodations to allow you to perform your job as necessary (such as providing a refrigerator or freezer for your medications if necessary, modifying your work schedule, etc.).

Focus on what you can do. Even the most

understanding supervisor or co-workers can

become weary of hearing: “I can’t.” Change

the conversation by focusing on what you

can do.



Taking Care of Yourself

When you are dealing with an undiagnosed illness or unexplained symptoms, all you want are answers. It’s easy to get anxious or frustrated when those don’t come easily. What’s important is that you’re not so focused on getting those answers that you forget to pay attention to your overall health and wellbeing. We all know that taking care of ourselves - being physically active, eating well and getting enough sleep - is important to good health. The materials below provide practical tools and tips to help you take good care of yourself, even as you seek more answers about your unexplained symptoms.

Signs of Possible Depression

Living with an undiagnosed condition can introduce a host of daily challenges that may put you at increased risk of depression. It’s important to remember that depression, although serious, is a treatable illness that many people have experienced and learned to successfully manage.

Despite its being very common, many people have misconceptions about depression. Because depression is difficult to see, some people don’t believe it’s real. They may not be able to understand why a person who’s depressed can’t just “get over it” or “shake it off.”

In reality, depression is a real illness and it can be a dangerous one. Depression is associated with higher rates of mortality, pain and physical illness. Aches and pains, digestive problems, fatigue, trouble sleeping, and changes in weight and appetite are all problematic side effects of depression that may interfere with your already compromised health.

So how do we know if we’re experiencing a temporary bout of the blues or something more serious? This is an important distinction to draw, as treatment for depression typically requires professional intervention. If you suspect that you may be depressed, a psychologist or physician will look for a collection of symptoms that are present over a significant period of time.

As you monitor yourself or someone you love for depression, it’s important to look for changes in behavior that last for more than a few weeks.

Here are some key symptoms of depression:

Feeling sad, empty or numb. Depression may feel like a dark cloud that can make everything seem hopeless. Pay attention to how long these moods last and how often they occur. People suffering from depression typically experience feelings of sadness or hopelessness on a near daily basis.

Diminished interest in activities. Depression can make you lose interest in activities that you once enjoyed. While it’s normal to be less interested in activities that have become more difficult because of your symptoms, take note if you find yourself less interested in activities you are still capable of doing.

Significant change in weight or appetite. When depressed, some people find comfort in food, while others lose interest in eating altogether. Be aware of your tendencies, and pay attention to weight losses, gains and significant fluctuations in appetite.

Sleep disturbances. Most people suffering from depression report unusual sleep patterns. Some people sleep much more than they normally would, while others sleep much less. Others experience a disturbed sleep cycle, staying awake all night and sleeping all day.

Fatigue or loss of energy. Depression can drain your energy, and make it impossible for you to go about your daily activities. Fatigue may present itself as an inability to keep up with everyday grooming, work, shopping or household chores.

Feelings of worthlessness or excessive guilt. These feelings are often inappropriate to the situation. Someone who is depressed might feel guilty for things they have no control over, including getting ill in the first place.

A feeling of being completely alone. People suffering from depression frequently



isolate themselves and pull away from loved ones. Take note if you find yourself avoiding conversations or wanting to be alone more than usual.

Recurrent thoughts of death. This symptom can look very different from person to person. Thoughts about death may be very explicit, or they may be more covert. People might engage in risky behaviors, like not taking medications as prescribed, or make passing statements that indicate they wouldn’t care if they weren’t alive. If you or someone you love is thinking about suicide, visit your local emergency room or call the National Suicide Prevention Hotline at 1-800-273-TALK.

Treating Possible Depression

Depression, although sometimes difficult to recognize and understand, is an illness like any other, and symptoms will not go away on their own without attention and intervention. When depression begins to interfere with everyday functioning (sleeping, eating, working or socializing), that’s a good indicator that it’s time to seek the help of a mental health professional.

Just like physicians, therapists have a variety of qualifications and specialties. You may want to seek the help of someone who works regularly with people with chronic illness. The most important thing is to find someone you connect with and trust. Don’t be afraid to speak or meet with several people before settling on someone you feel comfortable with. Finding the right therapist for you is a process, and it’s worth the time and effort.

Building Resilience

Resilience refers to an individual’s ability to bounce back from adversity, stress or trauma. It’s not something that you have or don’t have – it’s something that you can learn and develop. Here are some things you can do to build resilience and improve your overall emotional health:

Build a caring support network: Research shows that one of the most important factors in building resilience is maintaining caring and supportive

relationships. Reach out to friends and family to get support.

Be kind to yourself: Resilient people are as kind to themselves as they are to others. Remind yourself what you like about yourself. Forgive yourself. Set realistic goals.

Expect and accept change: Change is one of the few things we are guaranteed in life, yet we often work very hard to resist it. Resilient people are capable of adapting to new conditions and uncertainty. One way to become more accepting of change is by anticipating it and planning for it in advance. While you won’t be able to anticipate every possible change to come your way, you can become more accepting of change by imagining what you’d do in a variety of scenarios.

Control what you can: Research also shows that resilient people are focused. They take stock of what they can control and then take steps to actively improve those areas of their lives. Eat regularly and nutritiously. Exercise. Go to doctors’ appointments and follow your medical team’s directions. If something prescribed isn’t working for you, call your doctor or nurse. Get massages if you’d like. Get enough sleep.

Integrate more of what you love into your life: Resilient people share the belief that while life is complex, it’s also filled with opportunities. Brainstorm things that bring you peace, joy and happiness and incorporate those activities into your daily life. Take steps to reduce your exposure to people and things that make you feel badly.

Managing Stress

Stress is a part of the human experience. It accompanies life changes, both happy and sad, from the excitement of planning a wedding to the devastation of losing a loved one. We all experience some levels of stress in our day-to-day lives. However, when combined with dealing with an undiagnosed illness or unexplained symptoms stress can be especially difficult to manage.

For some people living with undiagnosed illness or unexplained symptoms, stress can come from



finding it’s difficult to complete ordinary tasks like running errands or cooking dinner. Others become frustrated by misdiagnoses and the uncertainty of knowing that something is wrong, but not knowing what. Still, others deal with the stress of having friends and family members who doubt they are truly sick. Many people dealing with undiagnosed illness learn to manage stress better over time by developing coping strategies that tend to their mind, body and spirit. What follows are a variety of coping methods that have worked for others. Stress is very subjective; what causes stress in one person may bring joy and pleasure to another. As such, what relieves stress also differs from person to person. Accept that stress is inevitable: One way of coping with stress is by learning to accept its inevitable presence in your life. Even the most laid-back among us encounter occasional frustrations. Rather than trying to eliminate stress entirely, accept that you’ll face some unexpected hurdles every day. Some of these challenges may be everyday annoyances and some may be much larger obstacles. However, if you can adjust your thinking to acknowledge that challenges are bound to present themselves, it’s easier to interpret potentially stressful situations as challenges to be overcome or changes to be accepted. Take stock: Consider taking stock of the things in your life that cause you stress. You can even make a list of common stressors you experience: work commitments, a particular relationship, having only 20 minutes to grab lunch during the day, etc. Be as specific as you can. Then, review the list and determine which stressors are within your control, and which are outside of your control. While you may not be able to control a deadline at work, you can control how often you speak to an emotionally draining acquaintance. Brutally cut your to-do list: Make a personal commitment to treat yourself well by setting realistic goals and prioritizing tasks that truly matter to you. Many people hold themselves to high standards, and not reaching a goal can leave them feeling discouraged. Be forgiving of yourself in regard to meeting self-imposed expectations. Imagine a close friend in your position. Would you chastise her for not accomplishing everything on her to-do list, or would you understand that she is

working hard to do the best she can? Extend this

same kindness to yourself. Prioritize: Make a list of everything you want to do and rank the activities in order of importance. Ask yourself if the items at the bottom of the list are truly necessary. If they aren’t, cross them off the list! Part of adjusting goals and prioritizing tasks can include having to tell people “no” sometimes. If saying no is something you have trouble with, take some time to understand why. Are you afraid of letting people down? Identifying what is behind your inability to say no may help you develop realistic strategies for asserting yourself. Saying no takes practice, but those close to you will understand if you communicate directly and honestly with them. Schedule in stress relief: Relaxation and stress relief rarely make it to the top of any busy person’s to-do list. This is why it makes sense to set aside time specifically for relaxation and for activities that reduce your stress. Some people enjoy gardening, a nice nap, yoga, or spending time with a loved one. Think about what leaves you relaxed, but also recharged. What can you do that directs energy toward you and helps you feel rejuvenated? Sleep well, feel better: We all know that a good night’s sleep can work wonders. Getting enough rest will help to ensure that you have the energy to deal with stressful situations when they present themselves. Check out the PHA’s tips for getting a great night’s sleep. Be good to your body: Reducing stress means being proactive about things in your life you can control. To an extent, your physical health is one of those things. Cultivating habits that directly affect and support your physical health can do wonders for reducing mental stress. Avoid smoking, excessive drinking and binging on junk food. Physical exercise is another well-known stress buster.

Sometimes talking to family and friends

just isn’t enough. If stress is getting in

the way of everyday functioning, talk to

a therapist, clergy person, or your

doctor.

https://www.phassociation.org/Patients/LivingWithPH/SleepWellFeelBetter



Maintaining Healthy Relationships

It's important to remember that when you are sick and stressed those who care about you are impacted, too. You may find yourself taking your frustration out on your family members and loved ones - the people you need the most. And your loved ones may become frustrated if you aren’t able to help as much with housework, carpooling, etc. So, what can you do to maintain healthy relationships and ensure that you and your loved ones are mutually supportive? The Pulmonary Hypertension has prepared a number of coping guides designed for individuals dealing with a chronic illness. Although these guides were prepared with the particular needs of individuals with Pulmonary Hypertension in mind, the guiding principles are universal:

Caring for Your Relationship with Your Partner Managing Stress - For Caregivers Helping Your Child Cope Coping as a Caregiver

Being a caregiver can be stressful, especially for spouses and partners who live with your illness - and perhaps the feelings and moods that go along with it - everyday. You can help to minimize their stress by actively seeking out additional sources of support. Consider the other people you can vent to or talk to about your feelings: A religious advisor, a trusted friend or even a counselor or social worker can also offer empathy and perspective.

Dealing with Common Issues

Dealing with the uncertainty of having an undiagnosed disease is tough, but when others question your credibility, a difficult situation becomes even more stressful. Although every situation is different, there are some common mindsets and anxieties (including your own!) you may encounter living with an illness without a label. We’ve provided strategies that can help you be prepared and face them head on.

“My Doctor Thinks It’s All in My Head “

"It's all in your head." Almost everyone who has dealt with a difficult to diagnosis condition has

heard this at least once, and it's especially frustrating to hear from the healthcare professionals you trust to help you. There are a few strategies you can use to ensure that your healthcare provider takes your symptoms as seriously as you do.

Be assertive: If you feel your healthcare provider is missing something, or not taking all aspects of your situation into account, ask for more time or a more extensive exam. Using the forms and resources in this Toolkit will ensure that you are organized and are able to share a complete medical history with your team.

Be prepared: Use our Toolkit resource to prepare for your healthcare visits with as much care as you would for any important appointment. If you aren't prepared to be specific about your symptoms - and the impact of your symptoms on your life - your healthcare providers may not fully understand your situation.

Seek an additional opinion: When you are dealing with a difficult to diagnose illness, you may have to seek the input and expertise of several specialist healthcare providers - and that is okay. Your primary healthcare team cannot be expert in everything, and the root cause of your symptoms may not be within your team's area of expertise. For tips on second opinions, refer to the Getting a Second Opinion section of this Toolkit.

Don't second guess yourself: When faced

with people who appear to doubt your credibility, question your symptoms or have no experience with your symptoms, it is easy to lose confidence. You may even begin to question whether your symptoms are real yourself. Remember: you know your body better than anyone else, and you know what is normal for you and what is not.

You Don’t Look Sick to Me

Along with "It's all in your head," you may find that friends, co-workers and even family members make this statement when they can’t “see” what's wrong

https://www.phassociation.org/edit/5/id/target=CaringforRelationship&pid=3982&did=0&tab=0

https://www.phassociation.org/edit/5/id/target=Managing%20Caregiver%20Stress&pid=3849&did=0&tab=0

https://www.phassociation.org/edit/5/id/target=Helping%20Your%20Child%20Cope&pid=2807&did=0&tab=0

https://www.phassociation.org/edit/5/id/target=Coping%20as%20a%20Caregiver&pid=3850&did=0&tab=0



with you or don't have a "label" for what is wrong with you. You may even get the sense that they don't believe you or think you are exaggerating. In the face of this type of reaction, it's easy to become discouraged or to start doubting yourself. So, what can you do to build understanding and ensure you get the support you need?

Be specific about how you feel, and the impact of how you feel on your ability to function. While you know what you mean when you say you are "too tired" or "feel crappy," that doesn't help others understand specifically how you feel. By using more descriptive language, and comparing how you currently feel with how you have felt in the past, you help others truly understand the impact your symptoms are having.

Actively engage others in the process. People who care about you want you to feel better and to get the diagnosis or treatment you need. In fact, those who love you may feel just as helpless as you do at times. You can help them help you by engaging them in your search for answers. This could include asking them to help with research, tracking your symptoms or even attending healthcare appointments with you.

Be empathetic with others. When you're sick, you're not the only one impacted. In addition to being concerned about you, friends, family and even co-workers may have to take on additional responsibilities or duties. Just like you, they may long for the "way things used to be" or miss the "old you."

“They Just Don’t Understand”

Living with an undiagnosed illness is difficult, and when others don't understand, it can also be isolating and frustrating. You can't "make" people understand, but working to improve communication can increase understanding, uncover unrealistic expectations and aid in problem solving. Effective communication is about building rapport, understanding and trust. Here are some steps you can take:

Share your understanding of the other person’s perspective and check for your part in any miscommunication.

Practice reflective listening. Repeat back a portion of what you have heard to ensure you understand.

Acknowledge the emotions and feelings that have been shared (you don’t have to agree or disagree, just acknowledge).

Use “I statements.” For example, “I feel hurt when you don’t ask for my input. Please let me share my feelings.”

Let go of the expectation that friends and family will all understand all the challenges of living with an undiagnosed illness. Some people in your life may not be capable of adapting to the uncertainty or changes that your unexplained symptoms may present. It’s OK to prioritize your time with the people who make you feel supported.

“I'm afraid I'll never know what's

wrong!”

By now, you probably already know that diagnosis is not always a quick process. No matter it might take, you are still needs and deserves the best care possible. In addition to using the materials and strategies outlined elsewhere in this Toolkit, here are some final suggestions. Stay Informed: By this point, you have probably done a lot of research. You probably found some useful information, as well as a lot of information about the diseases or conditions you don't have. Research is a never ending process, so don't stop looking for answers. You may even find out about new diagnostic tools and approaches.

Stay in Touch: To ensure you get the care you deserve and are able to take advantage of treatments to help manage your symptoms, it is important that you maintain regular contact with your healthcare team. Both you and your healthcare team should keep track of your symptoms and any changes that might offer new clues. It is always possible that new information or new tools will be able to help with your diagnosis.



Exploring New Coping Strategies: You are adjusting to a “new normal” and exploring new coping strategies may be helpful including:

Talk to a mental health professional: It's not uncommon for people dealing with undiagnosed to suffer from depression or anxiety. Sometimes it's not enough to talk to friends and family, and a trained professional can provide value insights.

Build new support networks: Whether you do it virtually or in person, expanding your network has the potential of providing you with additional perspectives, support and ideas.


If you’d like to learn more about your rights, visit these sites for more information:

Understanding Your Health Information Privacy Rights, Health and Human Services Office of Civil Rights

Speak Up. Know Your Rights, The Joint Commission

Family and Medical Leave, US Department of Labor

Disability, US Government's comprehensive resource on disability

Accommodation Information by Disability: A to Z, Job Accommodation Network

If you’d like assistance locating the right mental health professional for you, ask for recommendations from friends and family, your medical team and visit:

American Psychological Association's Psychologist Locator, American Psychological Association.

There are a variety of organizations offering help and resources including: Family Caregiver Alliance has long been recognized as a pioneer in health services. FCA supports and sustains caregivers with national, state and local programs and resources. Caring Voices Coalition empowers patients who live with a life threatening chronic disease through

comprehensive outreach programs and services aimed at financial, emotional and educational support.

SUGGESTED READINGS

Defining the New Normal: A Guide to Becoming More Than Your Diagnosis by Colleen Brunetti

Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why by Lisa Copen

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Paul J. Donoghue and Mary Elizabeth Siegel

You Don’t Look Sick! Living Well with Chronic Invisible Illness by Joy Sela

Can You Hear Me Now: (or do I need to yell into your stethoscope?) by Cynthia S. Brown

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/consumer_rights.pdf

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/consumer_rights.pdf

http://www.jointcommission.org/Speak_Up__Know_Your_Rights/

http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

http://www.disability.gov/

http://askjan.org/topics/atoz.htm

http://askjan.org/topics/atoz.htm

http://locator.apa.org/

http://locator.apa.org/

http://caregiver.org/

http://www.caringvoice.org/

PATIENT SELF-ADVOCACY TOOLKIT

www.PHAssociation.org/SelfAdvocacyToolkit

CRITICAL HEALTH INFORMATIONUse this space for any health information that emergency healthcare providers should know about you or your health.

PATIENT INFORMATIONName EmailHome # Cell #D.O.B. Address

ALLERGIES

� Check here if you are currently taking blood thinners.

EMERGENCY INFORMATIONPRIMARY CARE PROVIDER OFFICE #AFFILIATED HOSPITAL HOSPITAL #PREFERRED PHARMACY PHONE #SPECIALIST OFFICE #SPECIALIST OFFICE #PERSONAL CONTACT CONTACT # RELATIONSHIP:

HEALTH CONDITIONSPulmonary arterial hypertension (PAH) Date dx: Jan. 2014 Condition: Date dx:

Condition: Date dx: Condition: Date dx:Condition: Date dx: Condition: Date dx:

CURRENT MEDICATIONS (also see Medication List)Rx: Dosage/Amt per day: Rx: Dosage/Amt per day:Rx: Dosage/Amt per day: Rx: Dosage/Amt per day:Rx: Dosage/Amt per day: Rx: Dosage/Amt per day:

PAST SURGERIES

MEDICAL SUMMARY

IMPORTANT DOCUMENTS

Update this qUarterly. Last updated: / /

Megan Mallory

Text



HEALTHCARE TEAM CONTACTSType of Care Name Address Phone Fax Email $IÀOLDWHG�+RVSLWDO

3ULPDU\�&DUH�2IÀFH

Doctor:

Nurse:

Physician’s Assistant:

Specialty Care

Specialty Care

Pharmacy

Dental Provider

Eye Care Provider

Physical or Other Therapists

Other

HEALTHCARE CONTACT LIST

IMPORTANT DOCUMENTS



MEDICATION NAME STRENGTH OF EACH DOSE DOSES AT A TIME FREQUENCY PRESCRIBER START DATE STOP DATE

Example: Amoxicillin

250 mg 1 pill 3 times dailyDr. Jones

310-225-55655/3/2011 5/17/2011

IMPORTANT DOCUMENTS

MEDICATION LIST



PRIMARY INSURANCE INFORMATIONCarrier Group # Customer Service # Plan Year Start/Stop Date

ID # Plan Type (ex. PPO, HMO, etc.) Case Manager # What do I use this for?

SECONDARY INSURANCE INFORMATIONCarrier Group # Customer Service # Plan Year Start/Stop Date

ID # Plan Type (ex. PPO, HMO, etc.) Case Manager # What do I use this for?

PRIVATE PRESCRIPTION PLAN OR MEDICARE PART D INFORMATIONCarrier Group # Customer Service # Plan Year Start/Stop Date

ID # Phone # Case Manager # Pharmacy #

Private Plan Name/Medicare Part D Plan Notes:

ORIGINAL MEDICARE AND MEDIGAP INFORMATIONMedicare Carrier Medicare Group # Phone # Medicare Case Manager #

Medicare Claim # Medicare Type/Part[A, B] Medicare Customer Service # Plan Year Start/Stop Date

Medigap Carrier Medigap Group # Medigap Case Manager # Plan Year Start/Stop Date

Medigap Claim # Medigap Type/Part[A, B] Medigap Customer Service #

Notes:

MEDICARE PRIVATE PLAN (PART C) INFORMATIONCarrier Group # Phone # Case Manager #

Claim # Plan Name Customer Service # Plan Year Start/Stop Date

INSURANCE FORM

IMPORTANT DOCUMENTS



FAMILY MEDICAL HISTORYPatient Name: _____________________________ Last Updated: ___________________________ Date of Birth: __________________________

Sex: _______ Ethnicity: _______________________________ Occupation: ______________________________________________________

Street Address: __________________________ City, State __________ Zip Code ____________ Phone Number: __________________________

Spouse/Partner Name: _______________________ Date of Birth: ________________ Sex: _______ Ethnicity: ____________________________

Biological Brothers/Sisters and their Children

Sibling Name Date of Birth Sex Current Health Children (age & sex)

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

Biological Mother Name: _______________________________ Maiden Name: ____________________

Date and Place of Birth: ________________________________ Ethnicity: _________________________

Current Health/Health Problems: ______________________________________________________________________________________________

If deceased, age at death and cause: ___________________________________________________________________________________________

Mother’s Siblings and their Children


___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

MEDICAL RECORDS



FAMILY MEDICAL HISTORY IIMaternal Grandfather Name: _______________________________ Ethnicity: _________________________

Date and Place of Birth: ________________________________ Number of Brothers: _____ Number of Sisters:_____



Maternal Grandmother Name: _______________________________ Ethnicity: _________________________




Are there any other health concerns on the maternal side of the family not yet mentioned? ___________________________________________________________

__________________________________________________________________________________________________________________

Biological Father Name: _______________________________ Family Name: ____________________

Date and Place of Birth: ________________________________ Ethnicity: _________________________



Father’s Siblings and their Children


___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

___________________ __________ ______ ___________________________________ _________________________________________________

MEDICAL RECORDS



FAMILY MEDICAL HISTORY IIIPaternal Grandfather Name: _______________________________ Ethnicity: _________________________




Paternal Grandmother Name: _______________________________ Ethnicity: _________________________




Are there any other health concerns on the paternal side of the family not yet mentioned? ____________________________________________________________

__________________________________________________________________________________________________________________

Additional notes: _______________________________________________________________________________________________________

__________________________________________________________________________________________________________________

_________________________________________________________________________________________________________________

_________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________

MEDICAL RECORDS



APPOINTMENT, TESTING AND PROCEDURE LOGDate(s) Location/Facility Healthcare Provider Type of Appointment, Test or Procedure Reason

Example:2/1/2015

City Hospital Dr. Sam Jones Echocardiogram Shortness of breath

MEDICAL RECORDS



Date & Day Symptoms (swelling, shortness of breath, etc.) How much did these symptoms bother you?What, if any, idea do you have about what may

have caused your symptoms?(e.g., unusual foods, activities, events)

What did you do about your syptoms? Did it help?

Example:

Feb. 3Sunday

Shortness of breath when climbing stairs

Bothered me a lot - had to rest on stairs halfway up

Worked out for the first time this year

Used my asthma inhaler - didn’t really help

SYMPTOM TRACKER

8VH�WKLV�ZRUNVKHHW�WR�PDNH�QRWHV�DERXW�DQ\�V\PSWRPV�RU�ZHLJKW�ÁXFWXDWLRQ�\RX�PD\�H[SHULHQFH�EHWZHHQ�GRFWRUV·�YLVLWV��0DNH�VXUH�\RX�VKDUH�WKLV�LQIRUPDWLRQ�ZLWK�your healthcare provider. Together, you can review your progress and make sure you’re getting the most out of your treatment plan.

QUESTIONS AND NOTES



PREPARING FOR A MEDICAL APPOINTMENT

QUESTIONS AND NOTES

What unanswered questions do I have from my last appointment?_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

What questions have come up since my last appointment?_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

How have I been feeling since my last appointment? Better? Worse? New symptoms?_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Are there any other events or changes I want to remember to discuss during my appointment?_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________



QUESTIONS AND NOTES

Date: __________________________ Healthcare Provider: __________________________

Reason for appointment:__________________________________________________________________________________________________________________________________________________________________________

Any changes to treatment plan? � No � Yes (describe below)_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Other important notes:_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Date of next appointment: ________________________________

APPOINTMENT SUMMARY WORKSHEETUSE THIS WORKSHEET TO CAPTURE KEY POINTS YOU WANT TO REMEMBER FROM YOUR APPOINTMENT.



NOTES

EDUCATION & RESOURCES

PHA would like to thank Actelion Pharmaceuticals US, Inc. for their support in developing the Patient Self-Advocacy Toolkit.