Track, Trend, Talk: Three Important Ways to Take an Active Role in Your Care
Author: Voices of MPN
When you’re living with polycythemia vera (PV), myelofibrosis (MF), or essential thrombocythemia (ET), your symptoms, blood counts—and even medical procedures—tell a story. Depending on how closely you monitor your condition, that story can shape the discussions you have with your Healthcare Professional—as well as the decisions you make together about your ongoing management plan.
PV, MF, and ET are all part of a group of rare, chronic blood cancers called myeloproliferative neoplasms, or MPNs. Because MPNs are progressive conditions, they can advance or worsen over time. That’s why keeping an ongoing record of your health can be so important. Not only does it help you better understand the status of your MPN, but it also may help you recognize when something isn’t right.
TRACK your condition over time
Whether you’re jotting down notes in a journal or using one of the many available online tracking tools, tracking your MPN offers many possible benefits. For example, it can help you more accurately recall changes in your condition without having to rely on memory. In addition, it allows you to see patterns that you can discuss with your Healthcare Professional. Finally, it provides an ongoing record that documents your condition over time—something that may help ensure that your health concerns are taken seriously.
Remember, a complete picture of your health can be an invaluable tool that can inform the decisions you make with your healthcare team.
Stay ahead of the TRENDs
Keeping ongoing, detailed information about the various aspects of your MPN can help you take an active role in managing your own care. That’s because regularly monitoring your symptoms, blood counts, and the frequency of certain medical procedures can help you spot trends that may warrant a conversation with your Healthcare Professional.
Although everyone has good days and bad days, those "ups and downs" can be very meaningful for someone living with an MPN. For example, while keeping track of worsening symptoms or rising blood counts may be important—it’s equally important to understand the significance of the patterns revealed when you track them. When you are empowered with this information, you can take action early on by discussing this information with your Healthcare Professional to determine how your ongoing treatment goals may be impacted.
TALK regularly with your Healthcare Professional
Regularly tracking your MPN may help you discover important insights that can help you and your Healthcare Professional better understand the state of your condition—and ensure that you are receiving appropriate care. However, the only way those insights can prove useful is if you share them. That’s why it’s important to be an advocate for your own health—and to know when to speak up and start a conversation with your Healthcare Professional.
Be sure to schedule regular visits and conversations with your healthcare team. And remember, the more open and honest you are about how your MPN is affecting you, the better you and your Healthcare Professional can find the management approach that’s right for you.
Learn how tracking your MPN and identifying trends can lead to more productive conversations with your Healthcare Professional.