Living with pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH) can be challenging enough without the added stress of trying to make it to regular doctors’ appointments. These conditions cause high blood pressure in the arteries that connect the heart to the lungs, making it harder for the heart to pump blood efficiently. As a result, people with PH or PAH often experience shortness of breath, fatigue, chest pain, and other symptoms that can significantly affect their daily lives. When you’re feeling under the weather, the last thing you want to do is drag yourself out of bed. But what if you need to see a doctor?

One myPHteam member wrote to their network: “Has anyone been too weak to go see their doctor in person? My doctor told me because it’s been a year since he’s seen me, that he couldn’t fill any more prescriptions. I’m afraid I’m too weak to make it in, and I’m not sure what to do.”

If you have a serious condition like pulmonary hypertension, it’s important to attend your doctor’s appointments to make sure your disease is being closely monitored and you’re on the best treatment plan for your condition. If you’re dealing with extreme weakness, there are some options for coping with this symptom and ensuring you don’t miss your medical appointments.

Read on for some tips on how to manage weakness while staying on top of your health care with PH.

Members’ Experiences With Weakness

Weakness is a common problem among people living with PH, and members of myPHteam often mention this symptom in their updates.

Weakness can be a chronic problem, lasting days or weeks, or it can happen as a result of a sudden event, like a heart attack. One member wrote, “I’ve been having a lot of issues breathing and have had heart palpitations. Been feeling really weak the last week or so too.”

Another member shared, “Not doing too well. Had a heart attack a week ago. I’m home now but feeling weak and tired.”

Other members regularly share their experiences:

• “Tired and feeling weak.”
• “Chest pains, hard to breathe, weak, bad headache.”
• “I had an OK day today. Just fatigue and weakness.”

Managing heart disease and/or lung disease can feel taxing, adding mental stress to your physical symptoms. A combination of reaching out for support, making lifestyle changes, and getting resourceful about your health care can help you keep up with treatment.

1. Ask a Friend or Family Member for Help

It can be hard to ask for help, but it’s essential to use your support systems when you need them. When you’re feeling too weak to go out, or overwhelmed with related PH symptoms like fatigue, consider asking a trusted loved one to help you complete day-to-day tasks. For example, they could go to the pharmacy to pick up your medications.

If you have a doctor’s appointment coming up, consider asking for help with daily tasks, like grocery shopping, picking up your mail, and other errands. This assistance may help you to save energy for your doctor’s appointment. When you have PH, even simple tasks can make you feel exhausted.

Conserving your energy by asking for help is a form of self-care and may help you to feel more supported in your life with PH.

We understand that asking for help can be tough, especially if you’re used to taking care of the people around you. It may not feel like it, but being open and honest with your loved ones about how you’re feeling is a way to continue taking care of them. If your family knows what you’re going through and how they can help, this can help them feel prepared to know what to do when you have a bout of weakness or other PH symptoms.

One myPHteam member wrote, “This site has allowed me to accept my condition a little better than I used to because I have gotten support and information on this illness — and on how to be an advocate for myself.”

2. Switch Your Appointment to Telehealth

Switching an in-person doctor’s appointment to a telehealth visit might be a good idea if you are feeling too weak to leave the house.

Ever since the COVID-19 pandemic, more doctors have offered telehealth appointment options. There has also been some research on the effectiveness of telehealth for a variety of medical conditions. For PH, research suggests that it is possible to have someone with PH fill out a quality-of-life questionnaire and complete PH exercise capacity tests at home.

Even the idea of doing an exercise test can be overwhelming when you’re feeling weak from PH. But being able to do them in your living room — as opposed to commuting to a doctor’s office, sitting in a waiting room, and going into an exam room all before even doing the test — can be more manageable.

If your doctor agrees to a telehealth appointment to assess your pulmonary hypertension symptoms, you will use a secure, two-way communication service to conduct your visit. Here are some tips for making the most of a telehealth visit:

• Ensure you have a stable WiFi connection.
• Take the appointment in a private, well-lit setting.
• Have a pen and paper with you to write down notes during the visit.
• Don’t forget to mention your feelings of weakness (and any other symptoms) and whether they have been recently improving or getting worse.

Telehealth visits may not offer all the benefits of an in-person visit, like access to blood tests, chest X-rays, or an echocardiogram. However, you can still provide your doctor with important updates about your condition and symptoms that they will use to decide whether it’s essential that you come into the office for additional testing.

3. Use a Cane, Walker, or Wheelchair

Using a mobility aid when you are feeling weak can be a game changer. Whether you use it all the time or only when you’re feeling particularly weak, a cane, walker, or wheelchair can be incredibly helpful for getting around.

Every person with PH has different benchmarks of “success” with mobility, depending on disease severity and a variety of other factors that affect your health.

Members of myPHteam have discussed their experiences using mobility aids:

• “I walked to the store and pharmacy today with my walker.”
• “Today was good. … My PT and I walked about 320 feet. … I had my oxygen and walker though.”
• “I know my energy level has improved, and my physical therapy has gotten better. I just need a walker now. … One new idea I learned this week was about tennis balls to use on your walker. ... Cut an X in the top and put them on your walkers.”
• “I am tired of not getting to do things I really want to do. I finally got the walker. I am supposed to be getting a portable oxygen concentrator.”

It’s normal to have an emotional reaction to needing a mobility aid that you didn’t need before. Symptoms of pulmonary hypertension, like slowed blood flow, make it more difficult to get around and do the things you used to do.

• “Hi all. Today so far is good. I’m only doing small tasks and then taking breaks. My husband bought a wheelchair for me … sigh ... to get me shorter distances like into a doctor’s office. I can’t walk while carrying/pushing/or pulling anything.”
• “Many of us do fall. Many of us have fallen once and then again and more. There was a time when I told myself, ‘That’s it!’ I only walked even in my home if I used a walker. I used to fall into tables, chairs, and into the dressers.”

4. Keep a Journal of Your Symptoms

If there’s no way for you to make it to a doctor’s appointment of any kind, you can still try to keep track of your PH symptoms to report to your health care provider the next time you see them.

Take note of things like high blood pressure, shortness of breath, oxygen levels, or anything else you may be able to measure by yourself at home. You should also keep track of the level of physical activity you’re able to tolerate.

If your health care provider has the option to submit your notes in an online portal through some kind of “chat” function, you might be able to stay in contact with them that way. If not, keeping track of your symptoms over time can be beneficial, even if you’re unable to see a doctor right away. By keeping an accurate record of your symptoms, you can identify any patterns or changes in your condition and share them with your health care provider during your next visit. This information can help your doctor make an accurate diagnosis and develop an effective treatment plan.

When you have a condition like PH or PAH, your heart works extra hard. Whether your condition is due to family history of the disease, blood clots in your pulmonary arteries, or environmental factors (like long-term exposure to high altitudes) or is idiopathic (of an unknown cause), your doctor will try to understand your particular case in the context of your life and routine.

Keeping a journal of your symptoms and the activities that make them worse is a good way to make sure you can advocate for yourself the next time you see your doctor.

5. Ask About Medication

Medication might be able to help with some of the causes of muscle weakness, like peripheral neuropathy. When you do get the chance to see a doctor, take advantage of the opportunity to ask about treatments for muscle weakness or overall weakness going forward.

One myPHteam member wrote of their experience: “My neuropathy is in my feet and ankles. Before I got help, I walked with a walker and then could barely get to the bathroom. A medicine called gabapentin, which I take three times a day, has been my lifesaver. I take a lot of medicine, but it helps.”

When To Seek Urgent Help

In some situations, weakness might indicate a bigger problem. Weakness, especially in your arms or legs, is a common sign of chronic heart failure (of which PH is an example). However, weakness can also be a symptom of a heart attack.

Other heart attack symptoms include chest pain, shortness of breath, pain in the arms or shoulders, and lightheadedness.

If you think you or someone around you is having a heart attack, call 911 or the emergency service number in your area.

Pulmonary hypertension and pulmonary arterial hypertension are serious conditions that require prompt and appropriate medical attention. Although seeking medical care is the recommended course of action, there may be times when this is not immediately feasible. However, it is crucial to stay vigilant and manage your symptoms to reduce the risk of complications and improve your quality of life.

Talk With Others Who Understand

On myPHteam, the social network for people with different types of pulmonary hypertension and their loved ones, more than 50,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH and PAH.

Have you ever dealt with weakness from PH or PAH? How did you manage it? Share your experience in the comments below, or start a conversation by posting on your Activities page.