Polycystic Kidney Disease (PKD) in Grand Rapids, MI

Polycystic kidney disease (PKD) is the most common inherited kidney disease and a leading cause of chronic kidney disease (CKD) and kidney failure. In Grand Rapids and across West Michigan, PKD is regularly managed by nephrologists at major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health.

Understanding PKD, its symptoms, and local treatment options can help Grand Rapids residents protect their kidney health and get timely care.

What Is Polycystic Kidney Disease?

PKD is a group of chronic kidney diseases in which thousands of fluid-filled sacs (cysts) grow in the kidneys. Over time, these cysts:

  • Make the kidneys much larger than normal
  • Replace healthy kidney tissue
  • Reduce kidney function
  • Can eventually lead to kidney failure

PKD affects males and females equally. Both kidneys are involved, though one may develop cysts earlier or more severely than the other.

Simple Kidney Cysts vs. PKD

As people age, it is very common to develop one or a few simple kidney cysts:

  • About 50% of people over age 50 have simple kidney cysts
  • These cysts are not inherited
  • They usually do not cause symptoms
  • They typically do not require treatment

PKD is different. It is an inherited condition that causes many cysts in both kidneys and can seriously affect kidney function.

Types of Polycystic Kidney Disease

There are two main inherited types of PKD:

1. Autosomal Dominant PKD (ADPKD)

Autosomal dominant PKD is:

  • The most common form of PKD
  • Usually diagnosed in adulthood
  • Caused by a change in the PKD1 or PKD2 gene

If a parent has ADPKD:

  • Each child has a 50% chance of inheriting the altered gene and the disease
  • If a person does not inherit the gene, they cannot pass PKD on to their children
  • The disease does not skip generations

Sometimes ADPKD occurs in someone with no known family history. This can be due to a new genetic change (mutation). That person still has a 50% chance of passing PKD on to each of their children.

ADPKD can eventually lead to kidney failure, often between ages 50–70, though this varies.

2. Autosomal Recessive PKD (ARPKD)

Autosomal recessive PKD is:

  • Much less common
  • Often called “infantile PKD”
  • Usually diagnosed before birth, in newborns, or in early childhood

A child must inherit two altered genes (one from each parent) to develop ARPKD. Parents are usually healthy “carriers” with no symptoms.

Children with ARPKD often:

  • Develop kidney failure in early childhood
  • Have associated liver problems as they grow
  • Require close care at specialized pediatric centers, such as Helen DeVos Children’s Hospital in Grand Rapids

Symptoms of Autosomal Dominant PKD (ADPKD)

In the early stages, many people with ADPKD have no symptoms. Cysts often start to grow during the teenage years, but symptoms typically appear between ages 30 and 40 (sometimes earlier).

Common symptoms and signs include:

  • High blood pressure (hypertension) – can appear before cysts are visible on imaging
  • Pain in the back, sides, or abdomen
  • Headaches
  • Enlarged, painful abdomen due to enlarged kidneys
  • Blood in the urine (hematuria)
  • Frequent urinary tract infections (UTIs)
  • Kidney stones
  • Cysts in other organs:
    • Liver
    • Pancreas
    • Intestines
    • Brain (risk of aneurysms in some families)
  • Abnormal heart valves
  • Abdominal wall hernias (for example, around the belly button or groin)
  • Reduced kidney function or kidney failure

Michigan & Grand Rapids Considerations

In Grand Rapids, cold winters and icy conditions can increase the risk of falls and injuries. If you have enlarged kidneys or liver from PKD, your doctor may advise avoiding contact sports or activities with a high risk of abdominal trauma, such as:

  • Hockey
  • Tackle football
  • Martial arts
  • High-impact winter sports

A strong blow to the abdomen could injure enlarged kidneys, liver, or spleen.

Symptoms of Autosomal Recessive PKD (ARPKD)

ARPKD often presents before birth or in early infancy. Signs in severely affected babies may include:

  • Reduced amniotic fluid around the baby in the uterus
  • Unusual facial appearance related to low amniotic fluid (Potter’s facies)
  • Large abdomen due to enlarged kidneys, liver, or spleen
  • Underdeveloped lungs
  • Heart defects
  • Kidney failure at birth or within the first weeks of life

Because symptoms are severe, ARPKD is usually diagnosed quickly, and babies are often referred to specialized pediatric nephrology services such as those at Helen DeVos Children’s Hospital.

How PKD Is Diagnosed in Grand Rapids

PKD can be difficult to detect in its early stages. Routine physical exams, blood tests, or urine tests may not always identify the disease, especially before cysts become large or numerous.

PKD is often discovered:

  • During tests for other problems, such as UTIs or kidney stones
  • When a person is evaluated for high blood pressure
  • When a family member is diagnosed and relatives are screened
  • After kidney function has already started to decline

Common Tests for PKD

Healthcare providers in Grand Rapids (e.g., at Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health) may use:

  • Physical examination
    • Check blood pressure
    • Feel for enlarged kidneys or liver
  • Blood tests
    • Measure kidney function (creatinine, eGFR)
  • Urine tests
    • Look for blood or protein in the urine
  • Ultrasound
    • Simple, non-invasive imaging
    • Can detect even relatively small cysts in the kidneys
  • CT scan or MRI
    • Sometimes used to get more detailed images
  • Genetic testing
    • Specialized blood tests to look for changes in PKD1 or PKD2 genes
    • Often done when family history is unclear or for family planning

Genetic testing is not a routine test for everyone but may be recommended for certain families.

Genetic Counseling for PKD in West Michigan

If you or a family member has PKD, genetic counseling can be very helpful. Genetic counselors are trained health professionals who:

  • Explain how PKD is inherited
  • Review your family history and personal risk
  • Discuss genetic testing options for you and your relatives
  • Help you understand what a diagnosis means for:
    • Your health
    • Your lifestyle
    • Family planning and pregnancy decisions
  • Provide emotional support and connect you with support groups

You may wish to see a genetic counselor if:

  • PKD runs in your family
  • You have been diagnosed with PKD and are planning a pregnancy
  • You want to understand the risk of passing PKD to your children
  • You are considering prenatal testing or preimplantation genetic testing (PGT) with IVF

In Grand Rapids, ask your primary care provider or nephrologist for a referral to:

  • Clinical genetics services through major hospital systems (Corewell Health, Trinity Health Grand Rapids, Metro Health)
  • Regional or statewide genetic support organizations in Michigan

Treatment of Polycystic Kidney Disease in Grand Rapids

There is currently no cure for PKD. However, early detection and careful management can reduce or prevent many complications and slow the progression of kidney damage.

Treatment is usually coordinated by a nephrologist (kidney specialist) and may include care at:

  • Corewell Health Butterworth Hospital / Blodgett Hospital
  • Trinity Health Grand Rapids
  • Metro Health – University of Michigan Health
  • Mercy Health
  • Outpatient kidney clinics across the Grand Rapids area

Managing High Blood Pressure

Controlling high blood pressure is one of the most important parts of PKD treatment.

  • Antihypertensive medications (such as ACE inhibitors or ARBs) may be prescribed
  • You may be advised to:
    • Reduce salt (sodium) in your diet
    • Maintain a healthy weight
    • Get regular, moderate exercise
    • Avoid tobacco use

Good blood pressure control can slow kidney damage and reduce the risk of heart disease and stroke.

Managing Pain

Pain in PKD can be caused by:

  • Enlarged kidneys
  • Cysts bleeding or rupturing
  • Kidney stones
  • Back or abdominal strain

Treatment options may include:

  • Pain-relieving medications (always discuss with your doctor first)
  • Cyst drainage – in some cases, large cysts can be drained to relieve severe pain
  • Treatment of kidney stones if present

Important: Many common pain relievers, especially non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen, can worsen kidney function. Do not take NSAIDs regularly without medical advice.

Managing Blood in the Urine (Hematuria)

If you notice red, pink, or cola-colored urine, contact your doctor promptly. Management may include:

  • Increased fluid intake (if recommended by your doctor)
  • Pain medication
  • Antibiotics if infection is suspected
  • Bed rest in some cases

Seek urgent care if you have heavy bleeding, clots, or severe pain.

Treating Urinary Tract Infections (UTIs)

PKD can increase the risk of kidney and urinary tract infections. Symptoms of UTI include:

  • Frequent urination
  • Burning or pain with urination
  • Cloudy or foul-smelling urine
  • Fever or chills
  • Pain in the back or sides

If you have these symptoms, especially with PKD, see your doctor right away. Treatment usually includes:

  • Antibiotics
  • Increased fluids (if advised)
  • Follow-up testing if infections are frequent or severe

An untreated UTI can spread to the kidneys and cause serious complications.

Kidney Failure: Dialysis and Transplant

If PKD progresses to kidney failure (end-stage kidney disease), you may need:

  • Dialysis
    • A treatment that removes waste and extra fluid from your blood
    • Can be done at dialysis centers throughout Grand Rapids, including those affiliated with major hospitals
  • Kidney transplant
    • A healthy kidney from a living or deceased donor is surgically placed into your body
    • PKD does not redevelop in the transplanted kidney

Transplant evaluation and surgery are typically coordinated through regional transplant centers; your Grand Rapids nephrologist can refer you and help coordinate care.

Self-Care and Lifestyle Tips for PKD in Grand Rapids

Self-care cannot cure PKD, but it can support kidney health and help manage symptoms. Always follow your doctor’s advice, but general suggestions include:

1. Healthy Diet for Kidney Protection

Work with your doctor or a renal dietitian (available through major Grand Rapids health systems) to adjust your diet. Depending on your kidney function and lab results, you may be advised to:

  • Reduce salt (sodium) to help control blood pressure
  • Moderate protein intake (not too high)
  • Limit saturated fats and cholesterol
  • Limit caffeine (coffee, energy drinks, some sodas)
  • Maintain good hydration, unless you have fluid restrictions

Do not make major dietary changes without discussing them with your healthcare team.

2. Stay Active

Regular, moderate physical activity can help:

  • Control blood pressure
  • Maintain a healthy weight
  • Improve energy and mood

Examples suitable for many people in Grand Rapids include:

  • Walking indoors at malls or fitness centers during winter
  • Light cycling, swimming, or low-impact aerobics
  • Using indoor walking tracks at local community centers

Ask your doctor what level of exercise is safe for you.

3. Maintain a Healthy Weight

Aim for a weight that is appropriate for your height and body type. Your healthcare provider can help you set realistic goals and connect you with nutrition or weight-management programs available in West Michigan.

4. Avoid Smoking and Vaping

Smoking and vaping:

  • Damage blood vessels
  • Worsen high blood pressure
  • Speed up kidney damage

If you smoke, ask about smoking cessation programs offered through:

  • Corewell Health
  • Trinity Health Grand Rapids
  • Kent County Health Department

5. Avoid High-Risk Activities

If your kidneys, liver, or spleen are enlarged:

  • Avoid contact sports or activities with high risk of falls or direct blows to the abdomen
  • Use caution with winter sports on ice and snow, where falls are common
  • Wear seat belts properly to reduce risk of abdominal trauma in car accidents

6. Use Medications Safely

  • Avoid regular use of NSAIDs (ibuprofen, naproxen, etc.) unless your doctor approves
  • Always check with your nephrologist before starting new prescription or over-the-counter medications, herbal supplements, or high-dose vitamins

Local Resources for PKD Support in Grand Rapids, MI

If you live in Grand Rapids or the surrounding West Michigan area, you can seek help and information from:

  • Your primary care provider (GP)
  • Nephrologists at:
    • Corewell Health (Spectrum Health)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health
  • Helen DeVos Children’s Hospital (for children with PKD or ARPKD)
  • Kent County Health Department and Grand Rapids Public Health for community health resources and education
  • Statewide and national PKD organizations and kidney foundations for:
    • Support groups
    • Educational events
    • Patient advocacy

Ask your healthcare team for up-to-date contact information and referrals to local or online PKD support communities.

Key Points About PKD for Grand Rapids Residents

  • PKD is the most common inherited kidney disease and a frequent cause of chronic kidney disease and kidney failure.
  • Many older adults develop simple kidney cysts that are not inherited and usually do not need treatment.
  • Autosomal dominant PKD (ADPKD) is the most common inherited form; a parent with ADPKD has a 50% chance of passing it to each child.
  • There may be no symptoms in the early stages of ADPKD. High blood pressure, pain, blood in the urine, and kidney function decline often appear later.
  • Autosomal recessive PKD (ARPKD) is rarer, usually diagnosed in infancy or childhood, and can cause early kidney failure and liver problems.
  • There is no cure for PKD, but early diagnosis, blood pressure control, careful lifestyle choices, and regular follow-up with a nephrologist in Grand Rapids can slow disease progression and reduce complications.
  • In advanced cases, dialysis or kidney transplant may be needed. PKD does not recur in a transplanted kidney.

If you have a family history of PKD or symptoms such as high blood pressure, blood in the urine, or persistent back/side pain, schedule an appointment with your doctor or a nephrologist in Grand Rapids for evaluation and guidance.