Being Proactive with your PAH Doctor

If you have been diagnosed with pulmonary arterial hypertension (PAH), it’s vital to monitor your progress and to work alongside your healthcare team to ensure you’re on the right path. Of course, it all starts with finding the right doctor for you—ensure they are someone who is knowledgeable, prioritizes your needs, and has experience treating PAH patients. Pulmonologists and cardiologists who don’t specialize in PAH may only see a handful of PAH patients in their careers. It’s okay to ask your doctor how many PAH patients they support.

Once you’ve found a PAH specialist you feel comfortable with, how do you build that relationship and establish rapport? To start, frequency and consistency of visits is important. Establishing a set schedule for your appointments is crucial as you and your doctor become more familiar with each other. With each visit, your doctor will be able to monitor your progress, and you’ll have an opportunity to share what has changed. Keeping your doctor informed will be helpful when making decisions about your treatment plan.

You and your PAH specialist are a team. Decisions about your treatment plan should be the result of a collaboration between you and your doctor, as each one of you should play an important role in this process. You should feel respected and listened to, just as you give your doctor and their team respect.

Part of having mutual respect is being honest about how your PAH is doing and not being afraid to ask questions. Many patients hold back the truth from their healthcare team; subconsciously, we don’t want to “disappoint” our doctors, so we often put on a good face instead of being forthcoming. In fact, doctors want their patients to be candid. The more your PAH specialist knows, the more they can take that information into account to help you meet your goals.

Prior to each visit, think about how you can maximize your time with your doctor. Plan on asking questions about a specific topic, such as how your symptoms have changed, what progress you are making towards your goals, or questions about your treatment plan. Being proactive during and outside of your visit, such as doing your own research or getting involved in support groups, can help you stay on top of your PAH.

Try and get the most out of every conversation with your doctor and keep your goals in sight. If your needs are not being met, think about what changes you can make to build that relationship—or seek out a healthier one. After all, this is your life and your treatment!

If you’re struggling to come up with good questions to ask during your appointments, we’ve compiled a few questions to consider asking during your next doctor’s visit: