My Polycythemia Vera Journey to Empowerment from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Mark shares his journey to patient empowerment. Watch as he discusses symptoms that eventually pieced together his polycythemia vera diagnosis, helpful support resources, activities that have aided him  during treatment, and his advice to help other patients.

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Can MPN Patients Become More Proactive in Their Care?

What Are the Unmet Needs in Access to MPN Care?

MPN Caregivers: How to Provide Support During Appointments

---

Transcript:

Mark:

My name is Mark, and I live in the UK. I was diagnosed with polycythemia vera (PV) in April 2021 after a long path to diagnosis that was complicated by COVID-19 restrictions.

In December 2020, I had a routine blood test that flagged elevated hematocrit. My doctor told me the laboratory would re-do the test after Christmas and not to worry. Meanwhile, I researched various causes of elevated hematocrit and began drinking (approximately) 4 liters of water per day just to rule out any dehydration.

I had the repeat blood test in January 2021, which showed elevated hematocrit again. Next, I was sent for a JAK2 test and referred to a hematologist. I was also switching roles at work and moving at the same time. The moving and medical care changes were worsened by UK-wide COVID-19 restrictions. 

I got moved and awaited the results. A month passed with no news, and I could only connect with my medical team by Internet or phone. The test results could take up to 8 weeks. Then I started experiencing some strange eye issue with blurry zig-zag shapes and itching around my ankles and general skin discomfort after showering. I also had a gray-out in one eye that was like a shutter closing over my eye for about 30 seconds. I read about elevated hematocrit and microcirculatory issues before and decided to ignore it until my appointment. 

I was still awaiting my test results in March with a consultant appointment booked for April, and my doctor decided to repeat the JAK2 test. The results came in, and I was finally diagnosed with polycythemia vera. I was simply told that I would receive phlebotomies and was given a pamphlet. I went for my initial phlebotomy, and my journey began. Around that time, I told my doctor about the vision issues. They immediately referred me to the TIA clinic to investigate mini strokes and started me on aspirin. I  had no signs of a TIA, but the symptoms could not rule out the possibility. Fortunately, the vision issues stopped after my second phlebotomy.

I found the MPNVoice website and began learning about MPNs, which proved invaluable and helped me grasp my situation. It was so helpful to find others who lived with MPNs well beyond the Google-searched life expectancy, and reading their stories gave me comfort. Physically, I noticed that I had slowed down and was feeling sorry for myself, which isolation from COVID-19 restrictions didn’t help. I decided to start volunteering, re-started some yoga, and started exercising. I experienced immediate benefits and find keeping active is now a must.  

Initially, my hematocrit level didn’t lower, and I received advice for my hematologist to be more aggressive with my blood draws. With sometimes weekly draws, my levels started dropping. It took 6 months to level out to my target hematocrit maximum. 

Upon reflection, some things that I’ve learned during my PV journey include:

• Try not to panic about what you don’t know and can’t control – this allows you to focus on the important stuff.
• During the testing and diagnosis stage, try not to search too much on Google – it’s not helpful!
• Finding others who are in the same situation can make a rare illness less rare and far less scary.
• Keep active and don’t overthink everything. If you start feeling sorry for yourself, do something about it.

These actions are key for staying on your path to empowerment.