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Living With Pulmonary Hypertension

Posted on February 04, 2022
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Sarah Winfrey

Pulmonary hypertension (PH) is a specific type of high blood pressure that affects the pulmonary arteries — the blood vessels and other arteries in the lungs. When the right side of the heart is affected by PH, it’s called pulmonary arterial hypertension (PAH). And while life with either PH or PAH can present challenges, people living with either can lead a fulfilling life.

The key to enjoying your best life is to manage your PH proactively. That means maintaining a healthy weight, managing stress, communicating effectively about your condition, and tending to your daily responsibilities. Medical treatments — essential to maintain as you adjust to your PH — also help you manage your symptoms. Read on for strategies to help you optimize your life.

Maintain a Healthy Lifestyle

There are a number of lifestyle factors that can play into how you will feel as a person with PH. These include your diet, exercise, stress levels, and smoking status.

Diet

Eating a healthy diet makes your body strong and can give you the energy you need to live with PH on a daily basis. A heart-healthy diet is an especially helpful regimen. Such a diet includes fresh fruits and vegetables, lean proteins, low-fat dairy products, and whole grains.

Also, because salt and sodium have been shown to affect a person’s blood pressure, you may need to monitor and limit your consumption of these nutrients. Your health care team might also suggest adding phosphorus, calcium, magnesium, and potassium to your diet.

Keeping your fluid intake minimal can help reduce water retention and swelling. If you start to gain weight, your doctor may ask you to monitor and/or limit how much water you drink each day.

Exercise

Regular exercise can help keep you healthy as you deal with your PH. It can reduce your risk of developing other health conditions, lower your likelihood of dealing with anxiety or depression, and even help you sleep better. Exercise may be difficult while dealing with symptoms like shortness of breath and chest pain, so you talk to your doctor before you begin any new activities or routines.

Physical activity is also key to managing PH itself. It can enable your heart and lungs to be as healthy as possible, and it can help you avoid muscular atrophy (the weakening of muscle tissues caused by lack of use). However, any exercise for a person with PH must be completed under supervision, specifically that of a physical therapist (PT) who specializes in cardiopulmonary rehabilitation.

A PT can come up with an exercise plan that enables your health, but doesn’t push you past your physical limitations. If a person with PH or PAH pushes themself too hard, it can have adverse effects on their heart and lungs. Ask your doctor for a referral to a qualified physical therapist to land in good hands.

Stress Management

Living with pulmonary hypertension can be stressful simply in and of itself. After all, it’s a chronic, progressive disease that can be life-threatening if not treated properly. It’s key to have a plan to manage your stress in order to prevent its symptoms from negatively affecting both your PH and overall health. To manage your stress safely, you will likely have to make major life changes after you have been diagnosed.

Stress from pulmonary hypertension can be the catalyst for anxiety and depression, among other mental health issues. If you need help coping with those or other mental health symptoms, talk to your cardiologist or cardiology team about options for stress management.

Some of those options include:

  • Psychotherapy (talk therapy)
  • Online and in-person pulmonary hypertension support groups
  • Medication
  • Mindfulness practices
  • Exercise

Smoking

Smoking-related lung disease may be a cause of PAH. Smoking — and exposure to secondhand smoke — after a person has been diagnosed with PH or PAH can make their condition worse. Thus it is important for people with PH and PAH who actively smoke to quit as soon as possible. Your caregivers — and support communities — can help you to land on a cessation approach that will work for you.

Talking to Family and Friends

It can be surprisingly hard to know how to talk about your PH with the people you love the most. And it’s not necessarily simple for them, either. They may not understand what you’re going through, and your struggles may be so difficult they don’t know how to respond.

Here are some ways to talk about PH with people you are close to:

  • Provide concise examples of how PH affects you. Avoid complicated and lengthy explanations that may be hard for others to comprehend.
  • Let others know when you are experiencing pain or fatigue.
  • Be open about what kind of help you might need, even if it’s help with “simple” daily tasks.
  • Keep your loved ones and friends informed about your treatments. Sharing a list of your medications with those closest to you can aid in an emergency.

Talking to Co-Workers

Perhaps you want to be more discreet with co-workers about your condition than you are with your family and friends. That is perfectly fine: You have a right to medical privacy at work. In general, it might be best to only share information about your condition with co-workers you trust. They may be able to provide support when you need it most.

Family Life With Pulmonary Hypertension

Family dynamics can change after a family member has been diagnosed with PH. Because performing household tasks can become difficult at times for someone with PH, some of their responsibilities may need to change. Family members may need to provide medical care and offer more emotional support than they might have in the past. Open and clear communication is important so that expectations are well understood by the person with PH and by their family members providing support.

Parenting With Pulmonary Hypertension

Being a parent who has been diagnosed with PH can present its own unique hurdles.

These tips can help parents:

  • Accept your condition and the necessity of explaining it to your child in an age-appropriate way.
  • Ask for help when you need it in order to parent well.
  • Answer your children’s questions or find someone else who can do so.

Working With Pulmonary Hypertension

If you can work, but to do so you need special accommodations, talk to your human resources department. There are several ways to prepare best for this discussion. First, assess any accommodations or modifications needed to do your job and optimize your health and performance. Prepare a list of points and questions and cover your concerns with your doctor. Ask what accommodations they suggest and how those might help you. (Most likely, the accommodations you need will be based on the severity of your PH.) Have them share a document that outlines the ways your heart and lung disease affects you in particular.

Next, discuss accommodations with your human resources administrator. U.S. businesses with more than 15 employees are required to provide “reasonable” such accommodations for health conditions as part of the Americans With Disabilities Act (ADA). Explain your situation, share what your doctor has advised, and use the doctor’s documentation to validate your condition, capabilities, and challenges. Prepare a list of points and questions to cover your concerns with your human resources representative as well.

Disability Benefits

If you cannot work and have not been able to do so for 12 months because of pulmonary hypertension, you may be eligible for disability benefits. You will need to apply for these and submit documentation of your condition in order to receive them.

Paying for Medication

The treatments that you undergo will be specific to the type of PH you’re diagnosed with, the severity of your condition, and other factors. The costs of many PH treatments can be high. But you might have options to make your care more affordable.

First, health insurance of any kind helps. Health insurance can come via:

  • Medicare
  • Medicaid
  • U.S. Department of Veterans Affairs
  • Individual health insurance through the U.S. Department of Health & Human Services Marketplace
  • Group health insurance through an employer or professional association

If you do not have health insurance, or if you have insurance but need further support, there are resources to help you cover the costs of your medications. Manufacturers of some of the medications may have assistance programs to provide free or discounted medications to those who can not afford them. Ask your pharmacist for leads based on your prescriptions, and use online search engines to determine the exact assistance process.

Outside drug companies, some additional assistance programs include:

  • Medicare Savings Programs
  • Medicare Extra Help
  • State pharmaceutical assistance programs
  • Patient Access Network Foundation
  • The HealthWell Foundation

In some cases, other costs may also be covered. Talk with a Medicare advisor or social worker about the costs and the assistance programs you may be qualified for.

Traveling With Pulmonary Hypertension

Depending on how PH affects you, you may need to modify your travel plans or how you travel to avoid worsening or triggering pain and other symptoms. If you fly, or if you are planning to travel to a high-elevation location, speak with your health care provider to determine if you will need supplemental oxygen. (Thin air can be a challenge for people with PH.)

Also, take your treatments into consideration so your trip doesn’t interrupt your health care plans. (Talk to your health care team as part of your planning process.) Carefully assess what medications or supplies you will need while traveling, and organize your essentials well in advance of your departure date.

Find Your Pulmonary Hypertension Team

On myPHteam, the online social network for more than 46,000 people with PH and their loved ones, you can ask questions about living with pulmonary hypertension, join ongoing conversations, and tell your story.

Have something to add to the conversation? What has proved helpful — or not — as you live with PH? Share your thoughts and tips in the comments below and by posting on the team chat for myPHteam.

All updates must be accompanied by text or a picture.
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

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