Polycythaemia Vera Care in Grand Rapids, MI

Polycythaemia vera (PV) is a rare blood cancer that affects how your bone marrow makes blood cells. For residents in Grand Rapids and West Michigan, understanding this condition and knowing where to seek expert care—such as Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health—can make a major difference in long‑term health and quality of life.

What Is Polycythaemia Vera?

Polycythaemia vera is a chronic condition in which the bone marrow produces too many blood cells, especially red blood cells.

  • Red blood cells carry oxygen
  • White blood cells help fight infection
  • Platelets help your blood clot after an injury

In PV, abnormal stem cells in the bone marrow make more blood cells than the body needs. This makes the blood thicker (“more viscous”) and more likely to form clots, increasing the risk of serious complications like stroke or heart attack.

There is currently no cure, but with proper treatment—available through hematology and oncology specialists in Grand Rapids—most people can control symptoms and live many years with the condition.

Other names for polycythaemia vera include:

  • Primary polycythaemia
  • Vaquez’ disease

How Common Is Polycythaemia Vera?

Polycythaemia vera is rare. Estimates suggest that about five people per million are affected. It tends to:

  • Occur more often in men
  • Be slightly more common in people of Jewish ancestry
  • Develop after age 50, though it can appear earlier

In the Grand Rapids metro area (population 200,000+), only a small number of people are likely to be diagnosed each year, which makes seeing an experienced hematologist especially important.

Causes and Risk Factors

Abnormal Bone Marrow Function

PV is caused by abnormal function of the bone marrow stem cells. These cells start producing too many blood cells, particularly red blood cells. Many of these extra cells are also abnormal.

In most people, PV is linked to a genetic change (mutation), often in the JAK2 gene, which affects how blood cells grow. This mutation usually happens during a person’s lifetime and is not typically inherited, though family history may play a role.

Why It Happens Is Still Not Fully Understood

While we know that abnormal stem cells and certain genetic changes are involved, the exact reasons why some people develop polycythaemia vera are still unknown. Because it is more common in certain ethnic groups, including those of Jewish ancestry, a genetic link is suspected.

Over time, the bone marrow can become overworked. In some people, this leads to scarring of the bone marrow.

Myelofibrosis: A Possible Complication

When the bone marrow becomes scarred and stops working normally, the condition is called myelofibrosis. In this situation:

  • Normal stem cells are replaced by scar tissue
  • The body may struggle to produce enough healthy blood cells
  • Symptoms like fatigue, weakness, and an enlarged spleen can worsen

Myelofibrosis is one of the potential long‑term complications of polycythaemia vera and requires close monitoring by a hematologist, such as those at Spectrum Health or Trinity Health Grand Rapids.

Other Serious Complications

Around 1 in 10 people with polycythaemia vera may go on to develop acute myeloid leukaemia (AML), which is the most common acute leukemia in adults, especially older adults.

Other possible complications include:

  • Thrombosis (blood clots) – the most common cause of death in people with PV
  • Heart attack
  • Stroke
  • Peptic ulcers
  • Gastric (stomach) bleeding
  • Heart failure

Because Michigan’s cold winters can cause blood vessels to constrict, people in Grand Rapids with PV may be at even higher risk of circulation problems and should be especially careful about clot prevention and winter safety.

Symptoms of Polycythaemia Vera

Symptoms can develop slowly and may be overlooked, especially in older adults. Common symptoms include:

  • Headaches
  • Dizzy spells or lightheadedness
  • Itching skin, especially after a hot bath or shower (very common in PV)
  • Flushing or redness of the face and skin
  • Enlarged spleen (splenomegaly) – may cause a feeling of fullness or discomfort under the left ribs
  • Blurred vision or visual disturbances
  • Tiredness and weakness
  • Shortness of breath, especially with activity
  • Numbness, tingling, or burning in hands and feet
  • Unexplained weight loss or night sweats

If you live in Grand Rapids and notice these symptoms—especially persistent headaches, itching after bathing, or unusual redness of the skin—talk with your primary care provider or request a referral to a hematologist.

How Polycythaemia Vera Is Diagnosed in Grand Rapids

Diagnosis usually begins with a visit to your primary care doctor or a hematologist/oncologist at a local health system such as Spectrum Health, Metro Health, or Mercy Health.

Common tests include:

  • Complete blood count (CBC)
    • Checks levels of red blood cells, white blood cells, and platelets
    • In PV, red blood cell count and hematocrit (percentage of blood made up of red blood cells) are usually high
  • Vitamin B12 blood test
    • Levels may be elevated in PV
  • JAK2 mutation testing
    • Looks for the genetic change commonly seen in PV
  • Bone marrow biopsy
    • A small sample of bone marrow (usually from the hip bone) is examined under a microscope
    • Confirms overproduction of blood cells and checks for scarring or other abnormalities

These tests are available through major hospital systems in Grand Rapids, and results are typically reviewed by hematology specialists.

Treatment Options for Polycythaemia Vera

There is no cure for polycythaemia vera, but treatment can:

  • Reduce the thickness (“viscosity”) of the blood
  • Lower the risk of blood clots, stroke, and heart attack
  • Control symptoms like headaches, itching, and fatigue
  • Help extend life expectancy

Without treatment, about half of people with symptomatic PV may die within two years, usually from clot‑related complications. With proper management, many can live 15 years or longer after diagnosis.

Phlebotomy (Venesection)

This is often the first-line treatment:

  • A healthcare professional removes one unit of blood (similar to blood donation)
  • Done weekly or as needed until red blood cells make up less than 50% of blood volume
  • Helps thin the blood and reduce clot risk

In Grand Rapids, phlebotomy is typically performed at hospital outpatient centers or infusion clinics associated with Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health.

Medications to Suppress Bone Marrow Activity

If phlebotomy alone is not enough, or if blood counts remain high, your doctor may prescribe:

  • Hydroxyurea (hydroxycarbamide) tablets
    • Slows down bone marrow production of blood cells
  • Interferon injections
    • Helps control blood counts and may be preferred in younger patients or during pregnancy

These treatments require regular blood tests, which can be done at clinics and labs across Grand Rapids.

Medications to Reduce Blood Clot Risk

To help prevent clots, your doctor may recommend:

  • Low-dose aspirin (commonly used)
  • Warfarin or other blood thinners in selected cases

These medications are especially important in older adults and those with other risk factors such as smoking, high blood pressure, or heart disease—conditions commonly managed by primary care practices throughout West Michigan.

Secondary Polycythaemia: A Different Condition

Secondary polycythaemia refers to high red blood cell counts not caused by a bone marrow disease like PV. Instead, it is usually a response to low oxygen levels in the body.

Causes can include:

  • Cigarette smoking – still a concern in parts of Michigan
  • Chronic lung disease (such as COPD)
  • Heart disease
  • Living at high altitudes (less common around Grand Rapids, but relevant for travel or relocation)
  • Certain tumors that produce hormones stimulating red blood cell production

Treatment focuses on correcting the underlying cause, such as quitting smoking, treating lung or heart disease, or managing tumors. The Kent County Health Department and local smoking cessation programs in Grand Rapids can be helpful resources for those needing support to stop smoking.

Living With Polycythaemia Vera in Grand Rapids

Because PV is a long‑term condition, ongoing care is essential:

  • Regular follow‑up with a hematologist or oncologist
  • Routine blood tests to monitor counts
  • Prompt treatment of infections and other illnesses
  • Lifestyle changes to reduce clot risk, such as:
    • Staying active with walking or light exercise, even in winter (using indoor options during icy months)
    • Staying well hydrated, especially during hot, humid Michigan summers
    • Avoiding smoking
    • Managing other conditions like diabetes, high blood pressure, and high cholesterol

Cold weather in Grand Rapids can worsen circulation problems. People with PV should:

  • Dress warmly in layers
  • Protect hands and feet with gloves and warm socks
  • Avoid prolonged exposure to extreme cold

When to See a Doctor in Grand Rapids

Contact your doctor or seek urgent care if you have:

  • Sudden weakness, numbness, or trouble speaking (possible stroke)
  • Chest pain, shortness of breath, or pain in the arm or jaw (possible heart attack)
  • Severe, unexplained headaches
  • New or worsening vision changes
  • Unusual bleeding or bruising

For non‑emergency concerns, start with:

  • Your primary care provider
  • A hematologist/oncologist at Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health
  • Grand Rapids Public Health or the Kent County Health Department for information on local clinics and support services

Key Points About Polycythaemia Vera

  • Polycythaemia vera is a rare blood cancer caused by abnormal bone marrow function.
  • It leads to too many red blood cells, and often increased white blood cells and platelets.
  • The exact cause is unknown, but genetic changes (like JAK2 mutations) are common.
  • The condition is slightly more common in men and people of Jewish ancestry, and usually appears after age 50.
  • Major risks include blood clots, stroke, heart attack, myelofibrosis, and acute myeloid leukaemia.
  • There is no cure, but treatments such as phlebotomy, hydroxyurea, interferon, and aspirin can control symptoms and reduce complications.
  • With proper care from Grand Rapids hematology specialists, many people live more than 15 years after diagnosis.

If you or a loved one in Grand Rapids has been diagnosed with polycythaemia vera, partnering with a local hematologist and using regional resources—such as Kent County Health Department and major hospital systems—can help you manage the condition safely and effectively.