Managing Your Symptoms

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Hi. I'm Ron. I'm a polycythemia patient, and I've had the disease for over 25 years. I was originally diagnosed at the age of 38. And I'm here to talk to you about symptom management and talking to your doctor regarding lifestyle changes that may help control or mitigate your symptoms. [MUSIC PLAYING]

Before you go to your doctor, it's a good idea for you to write down your symptoms, any new ones that you've had, or any symptom that has changed and the time period that you noticed the changes happening. Describe what they are and how they're affecting your life or your ability to function on a day-to-day basis. Make sure that you communicate to your doctor all the symptoms that you're having or the ones that you're struggling with. And this is important for them to understand whether or not it's related to your polycythemia Vera, or it could be something else that's going on.

When you're speaking to your doctor about your symptoms, you should be as specific as you can with them-- for example, your fatigue or if you're having headaches or what brings them on or what relieves them as an example. When you're speaking to your doctor regarding your symptoms and your treatment, you may get into some areas that are uncomfortable to ask. But be confident that your doctor is on your team and a part of your health care and only wants the best for you. So make sure that you don't hold any of that back with your doctor so that you can work together as a team.

In speaking with your doctor, if you hear something or advice that seems contrary to what you understand, ask the doctor about why he's recommending or she is recommending that treatment for you and your understanding of why you may disagree with that.

Through your speaking with your doctor at any time, there is a lot of medical terms. And there are some new ones that may come up that you've never heard before. Again, if you're not understanding those, ask them to put it in simple English for you. What is it happening to me? What is it doing to my body? What is the treatment options doing to my body? So you understand the potential side effects that you may occur during your treatment.

As a patient, you have a certain style that you'd like to receive information under. Try to understand that. Do you want short answers? Do you want complete answers? Do you want to go into depth? Or you really just really trust them to make the right decisions, and you don't need to understand any of that.

As a polycythemia patient to this, the diagnosis in itself and the lifestyle impacts that you have can take a toll on you, on the mental health as well as your family around you as well. Be understanding that you're just human. And that's part of this process.

At your doctor's appointment, again, a couple recommendations that I have for you is to, again, write down the information that the doctor sharing with you. If they have the postvisit summary, you can review that and make sure that you understand everything that's in there. And also, if you have a caregiver with you, that they're in attendance and if they have particular questions they can ask is a great thing to do at that time.

Make sure that at your visit and at the end of the visit, you get copies of any recent blood tests that you have or any diagnostic tests that you have so that you have it in your records as well so that you can refer to them later. One of the things that you can do at your as a patient at your appointment at the very end is feed back to the doctor what you understood and heard during this appointment to make sure that you have everything that you need when you leave the office to manage your disease moving forward.