If you’ve been diagnosed with myelofibrosis, polycythemia vera, or essential thrombocythemia, it’s important to have a primary care physician, hematologist, and healthcare team that you feel comfortable with and at ease asking any question important to you. An empathetic, knowledgeable group can make your journey less trying. It’s okay to get a second opinion if you choose. Learn as much as you can. The more knowledgeable you are about your MPN the more empowered you will be in making decisions with your family, caregivers and physician(s). Please see the list of possible questions to get started.
Educate yourself, caregiver, family members. Learn everything you need to know about your diagnosis. Attend educational symposia and hear from the experts in the field of MPNs. View webcasts after events if you are unable to attend. Visit the numerous sites who focus on MPNs and read as much as possible. Ask questions. Become a specialist in your own MPN. Health care teams will appreciate your knowledge and input.
Remember to take notes during your appointments or have someone else take notes. If you don’t understand what your doctor is saying, ask he or she to explain in terms you can understand. Know who to call if you need medical attention outside of a scheduled doctor appointment. Register here for a MF Tracking Calendar. PV and ET calendars are being created.
If you are having elective surgery, make sure you meet with the entire team and your doctor to discuss the fact that you have an MPN that may require special needs. Carry an ID card that requests a call to your hematologist immediately if you are in an emergency situation that may require medical care or surgeries. List your MPN on that card with your physician’s name and phone number.
Take care of yourself. Eat healthy meals and snacks. Exercise if you are able. Rest when possible and find a way to relax whether through yoga, reading, gardening, or any activity that is therapeutic.
Join a support group. There are many support groups across the country and abroad. Support group meetings are a safe place to hear from other patients and caregivers who share similar experiences, issues, and concerns. It is also a place where you will hear updates on research, clinical trials, treatment options, what works for some, and what you might want to investigate.
See the list of support groups.
Use Social Media. If you are more inclined to use Facebook, Twitter, or other forms of social media, there are MPN patients who are accessible.