Sorry, you need to enable JavaScript to visit this website.

What Tools Can I Use to Take an Active Role in My Well-Being?

When you have a chronic condition like polycythemia vera (PV), it is vital to play an active role in your care. Your Healthcare Professional will monitor your condition and how it affects you and can also help you cope with stress and challenges that may arise.

To make the most of your time with the Healthcare Professional, write down your questions ahead of time and bring them with you. The list below will help you get started.

  • What are the goals for my PV?
  • What are my target blood counts and what are my actual blood counts?
    • Hematocrit (red blood cell volume)
    • White blood cell count
    • Platelet count
    • Other
  • What is my plan to keep my condition under control?

You may also want to ask these additional questions:

  • How often do you want to see me?
  • How often will I need to be monitored?
  • What types of tests or procedures will I need to have?
  • What do you feel is the best course of action for me?
  • What information do you want me to keep track of?
  • What symptoms or problems do you want to know about right away?
  • What are potential complications of my condition?
  • What should I do if I start feeling overwhelmed by my PV?

Be sure to work with your Healthcare Professional to set up a wellness plan that is right for you.

Explore more commonly asked questions about PV.

Where Can I Find Support and Resources for Living With PV?

The following is a list of helpful educational resources that you can use to learn more about living with PV.

LIVING WITH POLYCYTHEMIA VERA

Image of the Living with Polycythemia Vera PDF with a man and a woman on the coverImage of the Living with Polycythemia Vera PDF with a man and a woman on the cover Download buttonDOWNLOAD PDF

POLYCYTHEMIA VERA DISCUSSION GUIDE

Image of the PDF – Is Your PV Under Control - with an image of a woman on the coverImage of the PDF – Is Your PV Under Control - with an image of a woman on the cover Download buttonDOWNLOAD PDF


VIEW FACTS ABOUT POLYCYTHEMIA VERA

Image of the PDF – Key Facts About PVImage of the PDF – Key Facts About PV Download buttonDOWNLOAD PDF

VIEW POLYCYTHEMIA VERA
BACKGROUND INFORMATION

Image of the PDF with background information on PVImage of the PDF with background information on PV Download buttonDOWNLOAD PDF

TRACKING POLYCYTHEMIA VERA INFOGRAPHIC

Image of the Polycythemia Vera Track, Trend, Talk InfographicImage of the Polycythemia Vera Track, Trend, Talk Infographic Download buttonDOWNLOAD PDF

How Can I Connect With the PV Community?

For people living with PV, it’s important to know that you're not alone—and that there is a community of support within your reach. Connecting with other people who have been through similar experiences and managed similar challenges can make a meaningful difference on your journey with PV.

Through a variety of programs and resources, the Voices of MPN website links people with PV to disease information, educational programs, and community activities while inviting people to share their stories and spread disease awareness.

Explore community tools and resources

View Patient Videos From the PV Community

 

VIEW TRANSCRIPT

(onscreen text) Karen has polycythemia vera… or PV

My name is Karen, and I am 55, and I have polycythemia vera. I've had it for 27 years.

This is her PV State of Mine…

The most stressful thing about PV is the unknown. On a daily basis, you don't know how you're going to feel when you get up, if you're going to have a good day, or if you're going to have a bad day.

(onscreen text) …or where she is on her PV journey.

My journey has been a lot of ups and downs, but I wouldn't trade it for anything.

I feel like I was chosen for a purpose…this may be my purpose…is to tell other people my story.

(onscreen text) Her diagnosis was unexpected.

Leading up to my diagnosis, my husband was a public safety officer. He was on the EMT part of his training, and… palpitated my abdomen, said that it was distended and that he didn't feel that that was normal, and urged me to go to the doctor.

In a sense he saved my life because I never would have went.

PV is very difficult, and a lot of people don't realize that because they tell you that you don't look sick.

My husband did not really understand what I was feeling and my doctor explained to him that, "Yes, this is what she's feeling, and this is how she's going to feel." And that was pivotal.

(onscreen text) Her symptoms, her challenges, her feelings…define where she is on her journey with PV.

The fatigue is sometimes unbearable.

I have frequent headaches, and they've turned into migraines. I can tell when my spleen is enlarged because my appetite is gone.

Really, it's a day-to-day struggle. You get up in the morning and you don't know how you're going to feel, and you take the good days, and you push the bad days away.

(onscreen text) It’s important to be aware of how you feel and how PV affects your daily life.

When I first was diagnosed, I wasn't my own advocate. I trusted my doctor completely but did not really gather the knowledge that I felt that I needed, and I need to be my own champion, my own advocate, and I strongly encourage every patient to be their own advocate.

(onscreen text) Talk to your Healthcare Professional about where you are on your journey with PV.

When I visit the doctor's office, I make sure that I have a copy of my labs in my hands.

I have hard copies of everything. I have a notebook, a very large notebook that I keep track of everything. The most current goes on the top, and that way, I can look back and see if things have changed.

(onscreen text) Be your own advocate, and take an active role in your health.

The benefit of keeping track of all of this information is to really document your journey, to see where you've been and where you're going. And it's almost like a journal, a diary. Keep track of every piece of information that you can get from your doctor.

Regularly evaluating your PV, and understanding your own PV State of Mine, may help you recognize when something isn’t right.

I think that it's helpful for my doctor for me to keep that information because when I go visit him, I'm more educated and more prepared for his visit.

I feel like it's very important for a patient to have that type of relationship with their doctor.

(onscreen text) Know your PV State of Mine.

Have faith, have hope because there is hope, and a lot of your journey with PV is your attitude. You have to keep positive. You have to keep going. You have to keep fighting.

Snatch those good days and embrace them and live – and live.

(onscreen text) Get free resources to help you talk to your healthcare professional about polycythemia vera. Register now at www.PVStateOfMine.com

(onscreen text) You can also join the VoicesofMPN community. Visit VoicesofMPN on Facebook, Pinterest and YouTube.

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) Voices of MPN is a trademark of Incyte Corporation.

(onscreen text) © 2015, Incyte Corporation. All rights reserved. UPM-1007 08/15

The most stressful thing about PV is the unknown.
—Karen, Diagnosed with PV

 

VIEW TRANSCRIPT

My name is Aimee…

(onscreen text) Aimee was diagnosed with polycythemia vera… or PV

I was diagnosed in October 2013 with polycythemia vera.

It was a long journey.

(onscreen text) This is her PV State of Mine…

I had been going to doctors since 2008…

(onscreen text) …or where she is on her journey with PV.

It was very frustrating because I had symptoms. But because I had no diagnosis, I didn't know how to treat the symptoms.

(onscreen text) Establishing her diagnosis took almost six years.

And I had been…passed around from doctor to doctor…specialist to specialist trying to figure out what was going on.

… I was seeing a rheumatologist… I saw my general practitioner…I saw a neurologist…I saw a gastroenterologist.

All of these people were treating symptoms.

… But nobody told me what was happening with my body.

(onscreen text) Aimee wanted more information about her condition.

When I was diagnosed with PV after almost six years,

I finally had an answer to what had been going on for so many years.

I felt, okay maybe I’m not crazy after all…

…maybe what’s going on with my body is a real thing.

…I had finally figured out what was causing all of these symptoms.

…But then also the, okay what next.

My hematologist that diagnosed me was very knowledgeable…but…

I needed someone to find out what was causing everything.

(onscreen text) She needed a physician that specializes in MPNs*.

*Myeloproliferative Neoplasms

That didn’t happen until I started seeing a specialist

…the pivotal point for me…was when I became my own advocate…

(onscreen text) It was time to take matters into her own hands.

I found the specialist myself...

I went online and put in the information for an MPN specialist in this area.

(onscreen text) It was a turning point in her journey with PV.

…seeing a specialist is really what turned this around for me.

… he sat down with a notebook, paper and pencil and did a diagram of how your bone marrow works, how your blood works, how everything works.

…when I have more knowledge about something, I feel more comfortable.

…I always ask questions. I have a list when I go in. So he knows that it's gonna be... he's gonna have to spend a little time with me.

…I have a lot of information that I track from time to time…

… I've gotten to where I keep a diary with where my numbers are, my last visit, and how I'm feeling that month… to see if there’s any correlation.

(onscreen text) It’s important to regularly evaluate your PV and understand your condition…

(onscreen text) …and to be aware of how PV affects your daily life.

…My MPN specialist…charts the numbers as well. So it’s…a concerted effort.

One of the first things I would tell someone who is newly diagnosed with PV, is to be your own advocate.

…it was very important for me…because…

…if I had just kept going from doctor to doctor, I may still be…undiagnosed and thinking I’m losing my mind.

…it wasn’t until I became my own advocate and started…looking into what was going on and…looked into finding my own specialist, that things really started to come together for me.

(onscreen text) Take an active role in your health.

A specialist is going to be pivotal in your recovery and your maintenance of the disease…

…and they are so much more knowledgeable about…what causes it…

…I’m in control more…

…because I know what’s going on with my body.

That didn’t happen until I started seeing a specialist

(onscreen text) Talk to your Healthcare Professional about where you are on your journey with PV.

…it changed everything.

(onscreen text) Understand your PV State of Mine.

(onscreen text) Get free resources to help you talk to your Healthcare Professional about polycythemia vera. Register now at www.PVStateOfMine.com.

(onscreen text) You can also join the VoicesofMPN community. Visit VoicesofMPN on Facebook, Pinterest and YouTube.

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) Voices of MPN is a trademark of Incyte Corporation.

(onscreen text) © 2015, Incyte Corporation. All rights reserved. UPM-1057 11/15

I needed someone to find out what was causing everything. That didn't happen until I started seeing a specialist.
—Aimee, Diagnosed with PV

Icon of pages

Connect One-on-One With Members of the PV Community:

Register for CHAMPN Connections

GET CONNECTED
Calendar icon

Find Out What's Happening in the MPN Community

Explore the MPN Calendar of Events

VIEW UPCOMING EVENTS
Icon of two rings that represent PV awareness braceltes

Receive Updates on Polycythemia Vera

Get a PV awareness bracelet and educational resources when you register

CLICK HERE