Pulmonary hypertension is an incredibly complex condition. Because it is chronic, changes in medication and treatment are not only common but sometimes necessary for the best outcomes. Christopher King, transplant pulmonologist and chief of cardiovascular critical care at Inova Fairfax Hospital, shares how patients can take a more active role in their treatment plans.
Asking the right questions
King said the three questions he wishes patients asked more often are:
- What are the expectations for how I should feel in the short and long term from my treatment plan?
- What side effects can I anticipate? Will they improve over time?
- Besides taking my medicines, what else can I do to improve how I feel and function? (diet, exercise, taking diuretics, oxygen use, etc.)
By asking these questions, patients become more involved in their treatment plan and are more in tune with their bodies. This helps them recognize improvements or notice when an adjustment is needed to optimize how they feel in everyday life.
Stay up to date on PH knowledge
King says there are many misconceptions and myths around PH. One is that all patients with PH are treated the same way. Treatment plans must be individualized based on several factors, including their disease severity, comorbidities, prior medication intolerances, and patient preferences, values and lifestyle.
Another misconception is that a patient’s treatment plan stays the same. King says PH specialists regularly monitor patients and adjust therapy based on disease progression, changes in pulmonary status and side effects. Patients shouldn’t be alarmed if what once worked stops working. It may mean another pathway of their condition needs to be managed.
King also recommends that patients remain educated about PH so they are empowered to advocate for themselves and participate in treatment decisions. He recommends visiting the Pulmonary Hypertension Association website, which provides information on all PH groups and resources for patients at different stages of their PH journey. Additionally, King says patient support groups are a good way to learn firsthand what has worked for others.
Treatment plans must be individualized based on several factors, including their disease severity, comorbidities, prior medication intolerances, and patient preferences, values and lifestyle.
When to question your treatment plan
King says a treatment plan should be questioned or reevaluated anytime a patient doesn’t feel heard or included in decisions. A treatment plan should always have the patient’s goals in mind, whether related to exercise, daily activity or lifestyle. Also, if a patient feels they are not improving or are worsening on therapy, including side effects that affect their daily life, their treatment plan should be adjusted.
King also recommends that patients seek evaluation at a PHA accredited care center. It is never wrong to ask for a second opinion, and because PH is a specialized condition, it is important to seek expertise from an experienced provider. King believes patients will be pleasantly surprised at how open their treating physician will be to them seeking an evaluation at a PHCC because in the end, quality care and providing the best treatment plan is the goal.
How do treatment conversations differ through different PH stages
As a newly diagnosed patient, many discussions focus on understanding the condition and prognosis. Over time these conversations are often shift. King advises both providers and patients not to get caught in the trap of “everything looks stable, so nothing needs to change” during follow-up visits. Patients should undergo standardized risk stratification, and at every visit, providers should consider, “Am I doing enough to treat PH in this patient?” And patients should ask themselves, “Is there anything more that can be done to best manage my PH?”
King says treatment of PH is a partnership between the patient and their clinician. It is important that both sides are heard and have input in the development of the treatment plan. He encourages patients to not be afraid to ask questions and advocate for themselves.
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