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5 Ways To Advocate for Yourself if You Have PAH

Posted on August 29, 2022
Medically reviewed by
Steven C. Pugliese, M.D.
Article written by
Joan Grossman

  • People with pulmonary arterial hypertension (PAH) can benefit from researching their condition and becoming better equipped to advocate for their care.
  • Documenting symptoms and preparing for doctors’ visits ahead of time are important for self-advocacy.
  • Resources may be available to help with some of the financial burdens of living with PAH, such as copay expenses and insurance claims.

Pulmonary arterial hypertension is a rare condition that requires ongoing management. To help ensure that their condition is properly managed throughout its course, people with PAH can benefit from engaging in self-advocacy.

A form of pulmonary hypertension (PH), PAH is a type of high blood pressure that occurs in the lungs and the right side of the heart. In people living with PAH, blood vessels in the lungs become constricted, blocked, and damaged or destroyed. The condition reduces blood flow in the lungs and raises blood pressure in lung arteries, making the heart work harder to pump blood. Disease progression can lead to damage in the heart muscle and right heart failure, which is life-threatening.

PAH can develop due to various factors. For example:

  • Heritable PAH arises from a genetic mutation passed down in families.
  • Congenital heart disease occurs from heart problems present at birth.
  • Idiopathic PAH is of unknown origin.

PAH also may be related to substance abuse or other conditions such as HIV, liver disease, or connective tissue disorders.

Because it can resemble other types of lung disease and cardiovascular conditions, PAH can be difficult to diagnose. PAH is a chronic disease without a known cure, and management can be complex. Symptoms include shortness of breath, dizziness, fatigue, heart palpitations, and swelling in the feet, legs, and abdomen, as well as low oxygen levels that can lead to blue fingers and lips.

Members of myPHteam often discuss the need for self-advocacy with PAH. “I finally received a diagnosis for PAH this year after many years of testing. Yes, you definitely need to be your own advocate,” a member said.

The good news is that people with PAH have more treatment options and interventions than ever and are living longer. Self-advocacy plays an important role in better understanding the disease, promoting shared decision-making with health care professionals, and improving disease management and quality of life. Here are five ways to improve your self-advocacy.

1. Do Some Research to Better Understand PAH

Learning about PAH is an important component of self-advocacy. Knowing what the disease is, how it presents, and what treatment options are available can help you advocate for your care. You may want to research clinical trials, which you could discuss with your doctor.

The Pulmonary Hypertension Association (PHA) Patient Self-Advocacy Toolkit recommends that people with PAH do the following types of research:

  • Seek credible information online through educational (.edu), government (.gov), and nonprofit (.org) websites.
  • Check a website’s About Us section to learn about the organization’s mission. Be wary of websites that are selling or pushing products for people with PAH.
  • Seek a second opinion to help you make informed decisions about your care. It’s unlikely that you will offend your doctor by getting a second opinion, and a new perspective may give you fresh insight into your condition and treatment options.

“Go to all the legitimate sites to learn everything you can in order to be your own best advocate. Some doctors know but don’t have enough time with us. Other doctors have no clue what this is and try to wing it, but winging it is NOT in your best interest,” a myPHteam member wrote.

2. Keep Track of Your Symptoms and Medical Questions

Keeping a notebook or journal that documents how you feel on a daily basis can be helpful. As you do research about PAH or experience symptoms, jot down details — when, where, and how symptoms occur — and include any questions you have about them.

Sharing this information with your doctors can contribute significantly to the monitoring of your condition. If you write down your concerns and questions, you’ll be much better prepared to talk with your health care providers.

Your journal should also mention any unexpected weight changes. Sudden weight gain should be reported to your doctor immediately — it can indicate an unhealthy or dangerous retention of fluids caused by PAH.

One myPHteam member described how they document their condition. “Before every doctor's visit, I write a report on myself,” they said. “Write down your symptoms that you are concerned about. At the end, write down each question you want to ask. I find it easier to ask questions on paper than while talking. Save it in a folder on your computer. I have reports saved back to 2008 and maybe earlier. I give the doctor a copy and tell them ‘This is for you.’ It becomes a part of your chart.”

Take Notes During Appointments

During medical appointments, take notes in your medical journal to be sure you understand and remember treatment plans and recommendations for exercise and diet. If you do not understand something your doctor says, keep asking questions until you have a clear answer. Notes will help you stick to regimens that are essential for your PAH care.

It might be helpful to have a friend, family member, or caregiver take notes for you. “Take someone who knows your info to your appointments. There is a lot going on in a short amount of time. They will remember the things you miss,” a member suggested.

3. Get Copies of Your Medical Records

Ask your health care providers to give you copies of your medical records. If you’re able to access your records through an online portal, print them out and keep hard copies in a file or binder. That way, you can easily access your records if you want to review them with your doctor or have a consultation with a different provider. In addition, most PH physicians will want not only reports but also CDs containing any imaging studies performed at outside facilities.

One myPHteam member wrote, “I have a binder with copies of medical records (labs, X-ray results, discharge summaries, physician reports). Take them to appointments. It makes it easier for the doctor to see patterns in your disease and results of treatments.”

4. Be Financially Smart

Too often people switch medications to avoid out-of-pocket costs that can add up even with health insurance. Stopping or switching a medication because of cost may negatively affect your care. If you need help paying for medication, it’s important to become familiar with resources that may be able to assist.

If you are eligible, drug companies, nonprofit foundations, and state and federal assistance programs can provide financial help for copays and other types of medical costs. Before you make a health care decision based on cost, talk with your doctor about financial assistance. The Pulmonary Hypertension Association website lists numerous financial resources that may be able to help you reduce costs associated with PAH care.

Understand Your Health Insurance

Health insurance benefits and rights can be complicated, but don’t let insurance issues interrupt your care. It can be helpful to communicate with your health insurance company ahead of time about anticipated expenses. You also have the right to appeal if an insurance company denies a claim.

“My insurance denied my ambrisentan (Letairis) and tadalafil (Adcirca) after paying for it for three years. I appealed it, and now it is covered,” a myPHteam member said.

If you need help appealing a claim, you can contact the Patient Advocate Foundation, a nonprofit organization that helps people with serious health conditions manage financial issues, such as payments and approvals from health insurance companies. The foundation offers numerous services related to health care for people with conditions like PAH. Additionally, many times your health care team (nurses, pharmacists, social workers) can help with the appeal process.

One member wrote, “The good news is that I am now on oxygen therapy. I tried for months on my own to get it. But as soon as I got a patient advocate, it was a piece of cake!”

5. Reach Out for Support and Practice Self-Care

Support and self-care are critical for people with PAH, but it can be challenging to navigate the health care system. Be sure you are getting the follow-up care you need from your health care team. Research indicates that people with PAH benefit from multidisciplinary care that includes nursing and medical care and offers support for mental health, exercise training, social well-being. Coordination among any specialists who may be needed is also key.

Don’t hesitate to ask your doctor for a referral for mental health counseling if you have trouble managing stress. You can also ask for a referral for a physical therapist to develop an exercise program that is safe and appropriate for you.

Take advantage of in-person or online support groups like myPHteam. These groups can take some of the pressure off caregivers and family members and provide social support if you feel socially isolated because of your condition.

One member described the encouragement she has received from myPHteam: “This site has allowed me to accept my condition a little better than I used to be able to because I have gotten support and information on this illness — and on how to be an advocate for myself.”

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.

Are you living with pulmonary arterial hypertension? Do you have any self-advocacy tips to share? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Steven C. Pugliese, M.D. is affiliated with the Hospital of the University of Pennsylvania in Philadelphia, serving as the director of the pulmonary embolism response team, co-director of the comprehensive pulmonary embolism program, and an assistant professor of clinical medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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