Diagnosed with Polycystic Kidney Disease (PKD)? Here’s What Comes Next
Diagnosed with Polycystic Kidney Disease (PKD)? Here’s What Comes Next
If you’ve been diagnosed with polycystic kidney disease (PKD), you may have many questions about the future for yourself and your family. Since PKD can be passed down from parents to children, learning that you have this genetic condition can add another layer of concern.
“With PKD, there are fluid-filled cysts that develop on the kidneys, and they grow larger over time,” says Stephen Sammons, MD, a nephrologist at University of Utah Health. “That growth can eventually crowd out the healthy tissue and lead to a drop in kidney function and eventually kidney failure for some.”
Knowing more about PKD—and what you can do to manage it—can help you feel more prepared for what comes next.
What Are The Symptoms of PKD?
The most common type of PKD is called autosomal dominant polycystic kidney disease (ADPKD). It accounts for about 90% of PKD cases.
People with ADPKD often don’t have any symptoms until their 30s or 40s.
Symptoms may include:
- High blood pressure
- Urinary tract infections or kidney infections
- Blood in the urine
- Kidney stones
- Pain around the belly, sides, and back
A rarer form, autosomal recessive polycystic kidney disease (ARPKD), can appear shortly after birth or in early childhood. In some cases, it can be detected when the baby is still in the womb.
Symptoms of ARPKD include:
- High blood pressure
- Enlarged kidneys
- Trouble breathing
- Excessive urination
- Growth problems
- Abnormal blood work, specifically low red and white blood cells and low platelet count
Life After a PKD Diagnosis
While there is no cure for PKD, treatment can help manage your symptoms and, for some people, slow the progression of the disease.
With proper medical care, people with ADPKD can lead normal lives and have an average lifespan. About 75% of babies with ARPKD survive past the few weeks of life and may need dialysis or a kidney transplant before their 10th birthday.
At University of Utah Health, care teams work with patients to develop the best plan for care depending on factors such as the severity of the disease, kidney function, age, and other health conditions.
Sammons recommends healthy lifestyle changes for PKD patients, regardless of how advanced the disease is.
These include:
- Maintaining a healthy weight through appropriate exercise and balanced eating
- Managing blood pressure and blood sugar
- Avoiding high sodium intake
- Avoiding alcohol and tobacco use
- Drinking plenty of water
- Getting enough sleep each night
Some people with PKD may be candidates for Tolvaptan, an FDA-approved medication that slows the growth of kidney cysts. Tolvaptan may preserve kidney function for longer and delay the need for dialysis or a kidney transplant.
“PKD operates on a spectrum, so there are certainly a lot of patients who are going to have a decline in kidney function and may eventually need dialysis or transplant,” Sammons says. “But there are also people with PKD who might have more mild disease, and they may never actually experience kidney failure.”
What a PKD Diagnosis Means for Your Family
Because PKD is genetic, a diagnosis may raise questions about your family’s health.
Research shows that each child of a person with PKD has a 50% chance of developing ADPKD, and only one parent needs to have it for their child to inherit it.
“I generally recommend genetic screening for most people in early adulthood,” Sammons says. “Genetic testing is especially important in people who have family members with severe disease, because the earlier we intervene, the better the outcomes are.”
With ARPKD, both parents must carry the gene mutation that causes it. Each of their children has a 25% chance of developing the condition.
Receiving Specialty Care for PKD
The PKD Clinic at University of Utah Health bring specialists together to help patients and families manage the many ways PKD can affect their health. Depending on a patient’s needs, care may include:
- Nephrology
- Hepatology
- Urology
- Radiology
- Genetic testing and counseling
- Obstetrics
- Clinical trials
- Opportunities to participate in a voluntary PKD registry that supports research
- Family planning and pre-implantation genetic testing during in-vitro fertilization (IVF) in collaboration with the PKD-Free Alliance
This team approach ensures patients and their family members get the information and support they need.
“I think a big part of PKD management is really understanding the community aspect,” Sammons says. “I encourage people who have PKD or have family members with it to look into some of the available community that’s around.”
Sammons also recommends visiting the PKD Foundation, which connects people with PKD to education, advocacy, local chapters, and community resources.
A PKD diagnosis can affect more than your kidneys. But with regular care, healthy habits, appropriate treatment, and support from specialists, you can take an active role in protecting your health and planning for the future.
