Living with pulmonary arterial hypertension (PAH) can make everyday tasks and activities challenging. PAH can affect many aspects of day-to-day life, such as getting around, showering, and sleep.
Members of myPHteam often seek advice for managing daily life with PAH. “Tired … every day. Suggestions?” one member asked. “Every day is a struggle,” another member wrote.
Fortunately, there are some hacks that can help people with PAH throughout their daily lives. This article offers some of those tips including tried-and-true advice from other myPHteam members.
PAH can have a significant impact on physical mobility, a topic myPHteam members frequently discuss. Some members find using a walker makes shopping and other daily activities easier.
“I take my walker with me everywhere. I finally broke down and bought a three-wheeled walker to use when I know I’m just going in and coming right back out of stores,” one member wrote.
“Went to Walmart today and took my walker so I could sit down when I needed to,” another member shared.
Climbing stairs can also be difficult for people living with PAH. “The stairs are a killer, and I avoid them as much as possible,” a member said.
One member recommended a technique called pursed lip breathing, which helps slow breathing and can relieve shortness of breath. “Have you tried pursed lip breathing? I find it helps when I am walking, going up stairs, or just being busy and in a hurry,” they wrote. “Breathe in through your nose and breathe out through your mouth with your lips pursed together. I find my endurance is much better when I do that, and it allows a better exchange of air.”
Another member agreed: “Practice your pursed lip breathing. It really does help with your oxygen saturation!”
For people with PAH, something as simple as taking a shower can be difficult. Long, hot showers or baths increase the risk of lowering blood pressure to a potentially life-threatening level.
Some myPHteam members have shared suggestions to reduce the risks.
“Humidity is hard on us! Cool showers work,” a member said.
“I get bad anxiety when taking a shower or bath. I have to have a window cracked open or a small fan on,” another member offered.
Talk to your pulmonologist about other ways you can safely and comfortably shower or bathe.
Travel can also pose challenges for people with PAH. “I can still travel and enjoy it with some limitations. My portable oxygen concentrator makes it possible,” a myPHteam member wrote.
An oxygen concentrator pulls oxygen from the air and filters out nitrogen. These devices are available only by prescription for certain types of lung diseases, such as pulmonary hypertension and chronic obstructive pulmonary disease (COPD).
Researchers recommend that people with PAH discuss their travel plans with their doctor well in advance. It’s important to get medical advice before flying, particularly if you need supplemental oxygen or use a pump for medication.
People with PAH may experience edema, or swollen feet and legs, due to fluid retention. Health experts recommend that people with PAH reduce their intake of sodium (salt) and fluids to help prevent fluid retention and the swelling that it causes. Sodium is found in a variety of foods, including sweets, fruit drinks, and canned vegetables. You can learn more about reducing salt and fluids in this video from the Pulmonary Hypertension Association.
“Fluid gain is our worst nightmare! Read your labels! Sodium is in everything! Try to keep your feet elevated when you sit down. If you have support stockings, wear them during the day when you’re up,” stressed one member.
Members of myPHteam often talk about their own strategies for preventing and reducing swelling.
“When I see the swelling start, I get up and start walking around, which usually curtails the swelling,” a member said.
“I use the tube stocking they put on you just before they put on a cast. It works better than all those other stockings for me. My toes are free and it covers up to my knees,” another member wrote.
When temperatures get too warm or too cold, people with PAH can have difficulty catching their breath.
One member had this advice: “With the increased temps and humidity, my shortness of breath is also increased. Trying to do more breathing exercises and keeping an inhaler on me! This is such a learning process!”
Another member offered a tip for cold weather: “When the weather gets down into the teens and low 20s, I will usually wear a medical face mask to keep the frost and fog out of my lungs.”
People with PAH have higher rates of sleep-related breathing disorders, such as sleep apnea, which can disturb sleeping patterns. A poor night’s sleep can take a significant toll on your energy and well-being.
“I've noticed a lot of us have insomnia and need to take naps to get through the day,” a myPHteam member wrote.
“I can never sleep more than three hours at a time! It affects everything — breathing, fatigue, mood!” another member lamented.
Studies show that people with heart failure and sleep apnea can improve their sleep with the use of CPAP (continuous positive air pressure) devices. “I use the CPAP with oxygen because of my PAH,” wrote one member. “I can’t sleep without it.”
Sometimes, it’s just too hard to keep up with plans when living with PAH. Members of myPHteam have shared self-care tips to help you avoid taking on too much.“If I plan things or have an appointment or social event, I always make sure I say this one thing that is sort of the ‘get out of jail free’ card in a Monopoly game: ‘I will do my best to be there, but if for some reason, I don’t feel well, then I will let you know. I never know when I will get sick, but if I am sick, then we can reschedule,’” shared one member. “This is the best way to reduce stress and anxiety levels associated with living with PAH.”
Another member had this advice: “There are going to be plenty of up days and down days. Please do not overdo it on your up days because you will wind up paying for it for a day or two afterwards. Please try to pace yourself in a way that suits you, so you will have more up days than down.”
Having the right medical team is also essential, a member wrote: “This disease is not curable, but it is treatable. My first thought is you really need a pulmonologist and cardiologist who understand and treat this disease.”
Maintaining a healthy weight and getting an appropriate amount of exercise can have numerous physical and mental health benefits for people with PAH. But people with the condition are sometimes uncertain where to start with making healthy lifestyle changes.
“I am losing weight slowly by eating five small meals a day on a cake-size plate. I also drink a lot of water for hydration. So far, so good for me,” one myPHteam member shared.
Another member advised, “A dietitian can help you regulate your diet so you can get on to better things.”
Finding the right exercises can also be challenging. One member recommended a pulmonary rehabilitation program. “I went to pulmonary rehab this morning. They put me on a heart monitor. They start you out slowly,” they explained. “I rode a stationary bike and did the treadmill for 10 minutes each.”
“Do some mindful breathing. Find a slow yoga class online,” another member recommended.
One member wrote about an app they use to stay fit: “I just started an exercise program for all my lung problems. It’s an app I have on my iPad, and I mirror it on my TV. It covers breathing, balance, walking, meditation — all pretty easy, and I can do it at my own pace.”
Be sure to ask your doctor about what kind of exercise may be right for you. Your health care provider can give you a referral for a physical therapist who can work with you to find an appropriate level of physical activity.
A type of pulmonary hypertension, PAH is a rare medical condition. Specifically, it’s a heart and pulmonary disease that causes blood vessels in the lungs to become blocked, narrowed, or destroyed. This can result in high blood pressure in the lungs. In people with PAH, the right side of the heart works harder to pump blood through damaged pulmonary blood vessels, which can weaken and damage the heart muscle and lead to heart failure.
PAH symptoms include chest pain, shortness of breath, dizziness, fatigue, and edema (swelling) in legs, ankles, and the abdomen.
There are several subtypes of PAH, including:
There is no cure for PAH, but treatment plans can help manage symptoms and improve quality of life. Moreover, incorporating the above life hacks may make daily life with PAH easier.
On myPHteam, the social network for people with pulmonary arterial hypertension and their loved ones, more than 48,000 members come together to ask questions, give advice, and share their stories with others who understand life with PAH.
Are you living with PAH? Do you have any tips for making daily life with PAH easier? Share your experience in the comments below, or start a conversation by posting on your Activities page.