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Whether you’ve recently been diagnosed or are several years into life with pulmonary arterial hypertension (PAH), you may have questions about your treatment options. PAH symptoms like dizziness and fatigue can make it difficult to get the most out of your medical visits. Knowing what questions to ask can help you feel more in control and organized when talking with your pulmonologist (a doctor who specializes in the respiratory system).
Consider asking the following eight questions to guide your conversations about PAH treatment.
Managing a chronic condition like PAH often means regular visits with your doctor or other healthcare providers, sometimes every few months. Given that PAH can get worse over time, it’s crucial to detect changes early. Regular checkups allow your healthcare provider to closely monitor your symptoms and adjust your treatment plan as needed.
During checkups, your healthcare provider may do physical exams and tests like echocardiograms and breathing tests to check how your heart and lungs are working. They may also have you do exercise testing or a six-minute walk test to evaluate if your symptoms affect your ability to walk and exercise.
Talk openly with your healthcare provider about how often you should come in for checkups. Medical visits can be time-consuming. “All next week is full of doctors’ appointments,” wrote one myPHteam member.
However, regular checkups are essential for tracking PAH progression, evaluating your treatment plan, discussing any side effects, and giving you peace of mind.
“I went to the doctor today to see about the scarring on my lungs,” said one myPHteam member. “They said it might be from the medication that I am taking or from when I had COVID-19, but he said it is not bad, so I won’t have to take any new medications. I am happy.”
When you’re prescribed a new medication, it’s important to understand which symptoms it’s meant to address. Even if your pulmonologist or cardiologist (heart specialist) has explained the potential benefits, make sure you’re clear on why certain symptoms are being prioritized. This knowledge will help you better monitor your condition and track the effectiveness of your treatment.
“Sometimes, an additional or different prescription makes you feel better. … Try new things if your doctor feels they will help,” a member of myPHteam encouraged.
“I agree,” another member responded. “Each time a new medication was added to my treatment, it helped. I am on three PAH medications. I am feeling great!”
Asking questions can help avoid misunderstandings between you and your healthcare providers. “I am confused about medication for pulmonary hypertension,” one member said. “My cardiologist says I should be on medication, but the lung doctor says that some medications make it worse.”
Understanding why your healthcare provider is making a particular decision about your PAH can help you feel more confident in your treatment plan.
On the topic of medication, you should also ask what side effects you can expect when starting any new drug. This way, if new symptoms start to show up, you will know which ones might come from treatment and which might be related to something else.
For example, prostacyclin analog drugs come with the risk of side effects like nausea, vomiting, headaches, and chest or joint pain. Other drugs, called soluble guanylate cyclase stimulators, can cause side effects like headaches, hypotension (low blood pressure), and dizziness.
All medications come with some risk of unwanted effects. Ask your healthcare provider about all side effects so you know what to expect. While side effects can be uncomfortable, they might be less distressing if you’re prepared for them. Often, side effects can be managed or don’t last long.
Another key question to ask your healthcare provider relates to drug interactions. If your healthcare provider prescribes you a new drug, ask if it will interact with your current medications. This is particularly important if you’re being treated for other health conditions.
One member shared that they have pulmonary hypertension as well as chronic obstructive pulmonary disease (COPD). “I take a few medications for my COPD,” they said.
If you’re being treated for a condition like hypertension (high blood pressure) or lung disease, ask your pulmonologist how those medications may affect your PAH treatment. Some drug combinations are fine, while others can be dangerous.
Your pulmonologist should always think about your current medications when making your PAH treatment plan, but you should ask them to explain why they made those choices.
Although talking to friends, family members, and other people with PAH is a valuable practice, the only person who can give you specific medical advice is your healthcare provider. A healthcare professional will make different decisions for each person based on factors like your medical history, your family’s health, and your own health risks.
Don’t be afraid to ask your pulmonologist questions like “Why is this the treatment you are choosing for me? Why did we rule out other options?” Having the answers can help you feel more at ease and stick to your treatment plan.
One myPHteam member who hadn’t been on medication reached out to other members: “I haven’t been put on any medications for my PH. I’m in the bad stage. … I get short of breath even from talking. Should I ask my doctors about medication?”
A different member wrote about their experience, saying, “My new PAH doctor prescribed new medication for my nebulizer and a new inhaler. Going to give it time to see how the medication works.”
More serious interventions, such as a heart or lung transplant, may call for more in-depth conversations with your healthcare provider about your medical decisions. Your healthcare team should make you feel informed and supported as you navigate your condition and treatment options, and so you can plan for the future.
Living with PAH may require you to make changes in different areas of your life, like physical activity. Ask your healthcare provider how much and what type of physical activity would be right for you. You can also ask for suggestions regarding resources, group classes, or exercises you can try that will complement your PAH treatment plan. Be sure you know what treatment side effects to look out for, too, and when to call your care team for help.
For people experiencing PAH symptoms like shortness of breath, chest pain, and restricted blood flow, exercise and other physical activity can be difficult. It may require extra care and planning to ensure you don’t overexert yourself. You might also need help learning how to transition from more strenuous activities to gentler forms of exercise.
“Fifteen minutes was the max at the gym,” wrote a member of myPHteam.
Another member said, “I don’t purposely exercise, but I do get lots of walking in on most days. Yesterday it was over 5,000 steps, and I didn’t even realize it was that much until I took my watch off last night.”
Although your exercise routine may look different after a PAH diagnosis, ask your healthcare provider for their advice so you can stay safe and do what’s best for your health during treatment. They can answer your questions and refer you to other specialists, like physical therapists, who can help.
If you’ve connected with others who have PAH or other lung conditions, you may have heard about pulmonary rehabilitation. The goal of this therapy is to improve the quality of life for people with pulmonary conditions. It involves breathing techniques, gentle exercise, and education about lifestyle factors like nutrition for your specific condition.
Ask your healthcare provider if they think pulmonary rehabilitation may be a good fit for you and whether they can give you a referral. If you’re having trouble with daily activities, tell your healthcare provider. They can help determine if a therapy like pulmonary rehabilitation would help.
“Another good day at rehab,” reported a member of myPHteam. “Since going to rehab, I can walk farther, but still need the portable oxygen.”
The factors that help decide if pulmonary rehab is right for someone with PAH are different for each person. If you think it might be right for you or would like to learn more about it, ask your healthcare provider.
When you have PAH, you may face new health and safety risks. Air travel can pose a risk to people with PAH because of changes in air pressure and oxygen levels associated with high altitudes. You’ll want to make sure you’re not putting yourself at higher risk for problems like heart failure.
Some people with PAH are on oxygen therapy as part of their treatment plan. Oxygen therapy can increase oxygen levels in the blood and reduce pulmonary blood pressure by widening the pulmonary blood vessels. If you’re not already being treated for hypoxia (low oxygen levels), your healthcare provider may recommend oxygen therapy if you’re planning to travel by air.
Talk to your healthcare provider before traveling so you can ensure that you’re making safe decisions. If they approve your travel, they can also advise you on health precautions to follow while on your trip.
The most important thing to remember is that everyone with PAH (or any medical condition) has a different experience, and your healthcare team is best qualified to answer questions about your specific case.
On myPHteam, people share their experiences with pulmonary hypertension and pulmonary arterial hypertension, get advice, and find support from others who understand.
Do you have any tips for talking to your healthcare provider about PAH? What questions have you found particularly helpful to ask? Let others know in the comments below.
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