A pulmonary hypertension (PH) diagnosis can be life-changing. For many patients, the time immediately after this news can be filled with uncertainty and stress. But moving forward with treatment can be empowering and knowing what to expect. Here’s what people with a PH diagnosis need to know now.
How to find a pulmonary hypertension specialist
Pulmonary hypertension is a complex condition, so I encourage people to find an experienced provider who is part of a dedicated PH program.
The Pulmonary Hypertension Association certifies two levels of pulmonary hypertension care centers. A Regional Clinical Program can provide a diagnosis and first-line care. A Center of Comprehensive Care, like Temple, offers specialized, multidisciplinary care as well as advanced treatment options, when needed. Don’t be afraid to consult specialists until you find one who meets your needs.
How to prepare for your first appointment
It’s common for new patients to be concerned about their diagnosis and nervous about what to expect from that first appointment. Knowing how best to prepare can make that easier:
- Take care of paperwork in advance and understand your insurance plan.
- Start a binder to organize your medical information.
- Find a friend or family member to accompany you to the appointment and be another set of ears.
- Write down a list of questions.
What to ask at your first appointment
Some people feel shy about asking questions to a care team they’ve just met. But that is what we are here for! I make a point to leave plenty of time for questions at every appointment, especially when a patient is just beginning treatment.
People recently diagnosed with PH often ask:
- What’s causing my PH?
- Is the underlying condition treatable? If so, how?
- What kinds of tests do I need? Will insurance cover them?
- Is it safe to exercise? If so, what kinds of activity?
- Will PH affect treatment for other health problems?
- Will I need surgery? If so, what will it entail?
- Do I need supplemental oxygen? If so, how often, and at what flow rate?
All of these questions are valid and important, and your specialist should be able to address them for you. The answers may change as your care progresses, so please ask anytime you are unsure. We’re here to help you understand your condition and your care.
What to expect at the start of pulmonary hypertension treatment
After an initial consultation and any additional testing, your specialist will develop a treatment plan designed for your specific needs. This plan might include:
- Lifestyle changes, like healthy eating or physical activity
- Medications to prevent blood clots, control how fast blood travels through the body, or relax blood vessels
- Oxygen therapy to increase levels in the blood
- Procedures to remove blood clots or decrease pressure in the right heart chambers or pulmonary artery
It’s important that you follow this plan and get regular checkups with your specialist.
Your care team may also recommend support groups, counseling, or education programs to help you improve your quality of life. You will most likely also be asked to stay up-to-date on vaccines. This includes a flu shot at the start of each flu season.
Regular testing is typically part of monitoring PH. Depending on your condition, your care team may recommend regular blood tests, lung-function tests, chest x-rays, and more.
Living your life with pulmonary hypertension
With expert care, you can thrive with PH. At Temple Health’s Advanced Pulmonary Hypertension, Right Heart Failure & CTEPH/PTE Heart Program, that is our goal. We focus on leading-edge care and personalized support. Our program earned the Pulmonary Hypertension Association Center of Comprehensive Care designation. This recognizes our ability to effectively diagnose and treat people with all forms of PH. And we offer advanced treatment options not available elsewhere, including pulmonary thromboendarterectomy (PTE) surgery.
When you or a loved one needs a PH specialist, our multidisciplinary team is ready. Call 800-TEMPLE-MED (800-836-7536) or schedule an appointment online.