My Experience With Polycythemia Vera and Cardiovascular Risk

Author: Matt W, Community Voice Champion

In 2005, my pre-operative bloodwork for an outpatient back surgery revealed an abnormally high hematocrit level (a measure of red blood cell volume in the blood, stated as a percentage). Assuming there had been a mix-up, my labs were repeated, only to deliver the same result: my hematocrit or HCT level was at 60%. I was told that I needed to be checked for what my doctor called polycythemia vera (PV).

Fact: PV is a rare, chronic blood cancer where the bone marrow produces too many red blood cells. People with PV may also have too many white blood cells and platelets (blood clotting cells) in their blood, but having too many red blood cells causes most of the problems associated with PV.

Signs that PV is not being controlled can include a hematocrit level above 45%. Medical research suggests that an elevated hematocrit level can increase the risk of serious health problems, such as blood clots leading to heart attack or stroke.

During my final pre-op appointment, my surgeon observed something odd about my electrocardiogram (EKG), a test that measures the electrical activity of the heart and can help check for signs of heart disease. I was referred to a cardiologist, who repeated the EKG and cleared me for surgery, despite noting the high Hct level. What the EKG had, in fact, detected, was my heart struggling to push my abnormally thick blood through my body.

Fact: In people with PV, too many red blood cells can cause the blood to thicken. Thicker blood doesn’t flow normally through arteries and veins. Increased blood thickness and decreased blood flow, as well as abnormalities in platelets and/or white blood cells, may increase the risk of blood clots. Blood clots can cause a stroke, heart attack, or blockage of an artery in your lungs or in a vein deep within a muscle in your arms or legs (also known as deep vein thrombosis, or DVT).

After a period of prescribed post-surgical bedrest, I was advised to make an appointment with a local hematologist. After a bone marrow biopsy and review of my complete blood count (CBC) results, my doctor confirmed that I did, indeed, have PV. He said we’d talk about lowering my HCT and getting things under control once I felt better from my surgery. Unfortunately, within days, I began having visual migraines and dizziness. I was starting to panic about my ongoing chest pain, which was odd after lower back surgery.* With some searching, I quickly came across some online MPN support groups. One support group leader suggested that I find a "center of excellence" for MPNs, a place where I could see an expert doctor who treated patients with PV and understood the potential complications of the disease.

Within weeks, I had an appointment at a new clinic, where they did extensive blood work and a second bone marrow biopsy. My new MPN specialist explained to me that PV was a rare, chronic blood cancer that could be managed. She also personally called my cardiologist to get me in for a stress test as soon as possible, the results of which showed that I’d had a heart attack.

During the course of your care, it is important to see a doctor who specializes in treating blood disorders or blood cancers. An MPN specialist might be a hematologist, or an oncologist, or could have expertise in treating both blood diseases and cancer.

In retrospect, I realize just how severe my medical crisis had truly been. Being my own advocate enabled me to find a concerned and proactive MPN specialist. I also found the online MPN support that has been so helpful on my journey, and I’ve never looked back.

Learn more about the turning point in Matt’s PV journey.

*The noted symptoms may be indicative of heart attack or stroke, regardless of severity. Please contact your Healthcare Professional or emergency services right away if you experience these symptoms.

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