Whether you’ve just been diagnosed or are several years into life with pulmonary arterial hypertension (PAH), you may have a lot of questions about your condition, symptoms, and treatments. Symptoms such as dizziness and fatigue can make it difficult to get the most out of your medical visits, but knowing what questions to ask your pulmonologist can help you feel more in control and organized when talking with your doctor.
Communicating openly and effectively with your doctor can help improve your PAH outcomes and keep you on track with a treatment plan. Consider asking your pulmonologist the following questions to guide your conversation about your PAH.
Anytime you’re dealing with a chronic condition, scheduling doctors’ appointments can be a source of stress — especially when you’re not sure how often you need to follow up with your doctor to best manage your condition.
Changes in PAH can happen quickly, and catching them as soon as they occur is important. Regular checkups will help your doctor best manage your symptoms and consider new therapies if symptoms change or your PAH progresses. Typically, a doctor will conduct a risk assessment to classify if your PAH risk is high, intermediate, or low. This process helps them monitor your PAH and response to therapy.
Doctors might consider your PAH risk level when determining how often you need to come in for medical visits. These appointments may consist of a physical exam and other tests to check heart and lung function, such as a chest X-ray, echocardiogram, electrocardiogram, blood tests, or pulmonary function tests.
Talk openly with your doctor about how often you should come in. Although medical visits can be time-consuming — “All next week is full of doctors’ appointments,” wrote one myPHteam member — regular checkups are important for monitoring PAH disease progression, ensuring you’re comfortable with your treatment plan, and maintaining your 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, but he said it is not bad, so I won’t have to take any new medications. I am happy.”
Sometimes, you might be prescribed a new medication but not understand how it will affect your symptoms. Even if your pulmonologist or cardiologist has explained potential benefits to you, it can be helpful to clarify why a doctor is focusing on controlling certain symptoms over others. So, when thinking about questions to ask your health care team, consider asking what symptoms they hope to manage with a new medication.
“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 limit misunderstandings between you and your doctors. “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 a doctor is making a particular decision about your case of 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 can 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 similar symptoms, as well as low blood pressure and dizziness. Anticoagulants, which are used to prevent blood clots, increase the risk of abnormal bleeding.
These are just a few examples of PAH drugs and their possible side effects — but all medications typically come with some risk of unwanted effects. It’s helpful to ask your doctor about side effects so that you can know what to expect. Although side effects can be uncomfortable, you may find them less distressing if you’re prepared for them. Often, side effects can be managed or are short-lived.
Another important question to ask your doctor relates to drug interactions. If your doctor is prescribing you a new drug, ask if it will interact with your current medications. This is particularly important if you’re being treated for comorbid (co-occurring) conditions. “I have PH and COPD [chronic obstructive pulmonary disease],” said one member. “I take a few medications for my COPD.”
If you have a comorbid condition, like high blood pressure or lung disease, check with your pulmonologist about how your medications may affect your PAH treatment. Some drug combinations are fine, while others may not be advised.
Your pulmonologist should always consider your current medications when creating your PAH treatment plan, but you can absolutely ask them to explain their decision-making and reasoning if it would help you feel more comfortable with trying a new medication or therapy.
As is true with any chronic health condition, everyone’s experience with PAH will vary based on their symptoms and their disease’s severity. Although talking to friends, family, and other people with PAH is a valuable practice, the only person who can give you specific medical advice is your own doctor. A health care professional will make different decisions for different people, based on various factors such as a person’s medical history.
Don’t be afraid to ask your pulmonologist questions like “Why is this the treatment you are choosing for me?” and “Why did we rule out other options?” Having the answers can help you feel more at ease about your treatment 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 doctor about your medical decisions. Your health care team should make you feel informed and supported as you navigate your condition, treatment options, and planning for the future.
Living with PAH may require you to make changes in different areas of your life, like physical activity. It’s important to discuss any questions about lifestyle factors with your doctor so you can make the best decisions for your health and safety. Ask how much and what type of physical activity would be right for you. You can also ask your doctor for suggestions regarding resources, group classes, or exercises you can try that will complement your PAH treatment plan.
For people experiencing symptoms like shortness of breath, chest pain, and restricted blood flow, engaging in exercise and other physical activities can be difficult. It may require extra care and planning to ensure you don’t overexert yourself. You also might need help learning how to transition from more strenuous activities to gentler forms of exercise.
“Fifteen minutes was the max at the gym [for me],” wrote one myPHteam member. 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 doctor for their advice so you can stay safe and do what’s best for your health. They can answer your questions directly and also 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 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 doctor 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 performing daily activities with PAH, tell your doctor. 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 further, but still need the portable oxygen.”
The factors used to decide if pulmonary rehab is a good option for someone with PAH vary from person to person. If you think it might be right for you or would like to learn more about it, ask your doctor.
When you have PAH, you may encounter 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 that you’re not putting yourself at an increased risk of complications like heart failure.
Medical advice may differ depending on your condition stage and risk level. Talk to your doctor before traveling so you can ensure that you’re making safe decisions. If your doctor approves your travel, they also can 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 health care team is best qualified to answer questions about your specific case.
On myPHteam, the social network for people with pulmonary hypertension (PH) 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 PH and PAH.
Do you have any tips for talking to your doctor about PAH? What questions have you found particularly helpful to ask your doctor? Reply in the comments to this article, or start a conversation by posting on your Activities page.