Tracking My PV: Karen’s Story

Author: Voices of MPN

Karen’s journey with polycythemia vera (PV) has had its share of ups and downs. Managing her condition was once a daily struggle—but taking an active role in her own care through regular PV tracking made a meaningful difference.

Today, Karen regularly tracks her symptoms and blood counts. In doing so, she empowers herself with insights about how her PV may be changing over time—and uses this information to have meaningful discussions with her care team.

Learn more about how tracking has helped Karen become a champion for her own health while keeping her PV journey on track.

WATCH KAREN’S FULL STORY

Explore Karen’s inspirational journey with polycythemia vera (PV).

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

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