Living With Pulmonary Hypertension

Pulmonary hypertension (PH) is a rare but life-threatening disease that affects the blood pressure in the lungs. In PH, the heart needs to work harder to properly pump the blood to the lungs, causing symptoms like shortness of breath (dyspnea), fatigue, dizziness or fainting spells (syncope), chest pressure or pain, swelling (edema) in the ankles, legs and abdomen (ascites), bluish color to the lips and skin (cyanosis), and irregular heartbeat.

There is currently no cure for the disease, and living with pulmonary hypertension is not always easy. There are, however, treatments that can help ease the symptoms of the disease and improve patients’ quality of life. In addition to discussing therapeutic methods with a physicians, patients can also make changes to their lifestyle and adopt strategies to cope with the physical and emotional aspects of the disease and lead happy, fulfilling lives.

Ongoing Care for Living With Pulmonary Hypertension

The National Heart, Lung and Blood Institute, from the National Institutes of Health (NIH) has issued a series of guidelines regarding living with pulmonary hypertension, which begin with recommendations about the importance of ongoing care to improve patients’ lives. After being diagnosed with the disease, patients need to follow their doctor’s plan and should call the doctor when symptoms get worse or change, since addressing the symptoms sooner makes it easier to be treated.

In addition, patients should also ask their doctors about symptoms that require emergency care, as well as about taking any over-the-counter medication since they can interfere with the prescribed drugs for PH. Due to the increased risk for patients with PH, they should also ask about a pneumonia vaccine, a yearly flu shot, and birth control. The NIH adds that PH sufferers should pay attention to weight and if a rapid weight gain (2 or more pounds in 1 day or 5 or more pounds in 1 week), patients should call a doctor, as it may mean that PH is worsening.

Lifestyle Alterations for Improving Pulmonary Hypertension

Lifestyle alterations may be important to cope with PH symptoms as an addition to the recommended therapies. The type of alternations depend on the type of PH diagnosed, and patients should discuss them with their physicians. However, the overall recommendations from the NIH include:

  • Quit smoking to avoid symptom worsening. Physicians can help with programs or products that make it easier, such as the Diseases and Conditions Index’s Smoking and Your Heart or the NHLBI’s “Your Guide to a Healthy Heart.”
  • Maintain a healthy diet and weight by including daily consumption of fruits, vegetables, and whole grains, lean meats, poultry, fish, and fat-free or low-fat milk or milk products, as well as by reducing the intake of saturated fat, trans fat, cholesterol, sodium (salt), and added sugar. Articles like NHLBI’s Aim for a Healthy Weight, “Your Guide to a Healthy Heart,” and “Your Guide to Lowering Your Blood Pressure With DASH” may help with maintaining a pulmonary hypertension diet.
  • Be physically active, including walking, to strengthen the muscles. Patients should discuss what amount of activity is safe, and should avoid activities like lifting heavy objects or weights, using hot tubs or saunas, or hiking to high-altitude areas.

Emotional Implications of Living With Pulmonary Hypertension

In addition to the physical implications of living with pulmonary hypertension, there are also emotional, social and financial implications associated with the disease. Fear, anxiety, depression, and stress are common among patients, since there is a constant preoccupation about the medical condition, treatment, finances, and other issues. Patients can discuss the issues with their healthcare team or seek a professional counselor. In the case of depression, patients can also be prescribed antidepressant medication to improve quality of life.

The NIH also suggests that patients join a support group, which can help them adjust to living with the disease by connecting with other people with the same struggles. In addition to physicians and healthcare teams, patient associations can also provide advice and support. The Pulmonary Hypertension Association (PHA) is the largest non-profit organization of its kind in the country and offers a series of resources.

PHA’s Resources to Improve Living With Pulmonary Hypertension

The association believes that PH patients can benefit from the experience of thousands of other patients who have learned to effectively manage the disease. Therefore, PHA offers a section with tips, tools and resources to help living with pulmonary hypertension.

  • Empowered Patient Online Toolkit includes downloadable PH-specific templates and checklists to create a personalized medical binder.
  • Day-to-Day Living can help simplify the daily routine with tips from long-term survivors.
  • Coping with PH helps patients identify strategies for coping with the emotional and social aspects of PH.
  • Health and Medication Management is a guide to manage the medications and coordinate the overall healthcare.
  • Emergency Situations helps patients prepare for emergencies before they happen.
  • Caregiver Shout-Outs are meant to honor family members and friends in the PH community who provide patients with daily encouragement and support.
  • Working with PH is a guide to make and keep a place for patients within the workforce by listening to their body and knowing their rights.
  • Diet and Nutrition offers recommendations on keeping the diet on track with advice from PH experts.
  • Exercise and PH is a guide on getting active without overexerting your body.
  • Traveling with PH includes recommendations to plan ahead for safe and comfortable travel with PH by car, plane or train.
  • Climate and PH is a guide for patients to prepare weather and altitude alterations.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.