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Living with PKD

A PKD diagnosis can be overwhelming, but there are many resources available. Learn more about your diagnosis, managing your PKD, common challenges and FAQs.

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Resource Centre

The PKD Foundation of Canada leads the national fight against PKD through research, education and support for those affected by the disease. Find resources to help support you and your loved one.

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Clinical Trials and Research Grants

Clinical trials are now exploring new treatment and management options for PKD. Check back soon to learn more about participating in clinical trials and recent research grants.

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We Hope To Answer Your Questions

You’re here because you or someone you love has been diagnosed with polycystic kidney disease (PKD). Below, you can find some of the most frequently asked questions about an ADPKD or ARPKD diagnosis in a variety of categories, including living, nutrition and treatment options.

What is ADPKD?

Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases, affecting approximately 1 in 500. It does not skip a generation. There is usually a family history of the disease and parents with ADPKD have a 50 percent chance of passing the diseas...

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How do you get ADPKD?

ADPKD is passed from one generation to the next by an affected parent. An ADPKD parent has a 50 percent chance of passing the PKD mutation to each of his/her children at conception. Scientists have also discovered that approximately 10 to 20 percent of the PKD patient community became affected th...

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What are the symptoms of ADPKD?

Early in the disease, patients often experience no symptoms. In fact, many people don’t realize they have ADPKD because they have so few, if any symptoms. Once symptoms develop, they include:  High blood pressure or hypertension  Chronic pain or heaviness  Hematuria or blood in the urine Urinary...

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What is a cyst?

A cyst in the kidney begins as an out-pouching of the nephron (functional unit of the kidney) and can occur anywhere along the length of the nephron. Approximately 70 percent of cysts detach from the nephron when they are still small, about 2 mm (1/8 inch) in diameter. Over time, the cysts enlarg...

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What do the kidneys do?

The kidneys are bean-shaped and about the size of a fist, located in the middle of the back, below the rib cage. They filter approximately 200 quarts of blood daily, reabsorb 98 percent of the filtrate and regulate the composition of the blood by removing waste and by other compounds.

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What are the complications of PKD?

In addition to kidney problems, other organs can be affected, including the liver, spleen, pancreas, vasculature, testes, seminal vesicles and intestines. A large percentage of people with ADPKD will develop liver cysts during their lifetime. Cardiovascular complications include high blood press...

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How will PKD make me feel?

If you’re living with polycystic kidney disease (PKD), you will want to take steps towards maintaining your quality of life – it is possible to continue living a happy, fulfilling life after diagnosis. One of the most common concerns for those living with PKD is chronic pain management; however t...

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Can I still work with PKD? Do I need to tell my employer I’ve been diagnosed?

Most people with PKD can continue to lead fulfilling careers after a diagnosis, and the decision to tell your employer about a PKD diagnosis can be a deeply personal one. Some considerations to factor into your decision may be whether you will need special accommodations at your work place, flexi...

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How does PKD affect male fertility?

Men with autosomal dominant polycystic kidney disease (ADPKD) do not typically experience a decrease in fertility although ADPKD can be associated with cysts in the male reproductive tract. Defects in sperm function have also been associated with ADPKD. Men with ADPKD concerned about fertility is...

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Is it OK to get pregnant once diagnosed with ADPKD?

When beginning a family, it’s important for both parents to understand that there’s a 50 percent chance that the baby will inherit PKD. It is possible to determine whether the fetus has PKD. Potential parents should also consider the following:  Roughly 16 percent of people develop new onset hyp...

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Is PKD contagious? How do other family members get it?

PKD is not contagious. It is a genetic disease, which means you have it in your chromosomes.

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Where can I get tested to find out if I have PKD?

Access to a Canadian genetic test site can be found at the DNA Testing Centres of Canada. Additionally, a list of genetic test sites around the world is available through the National Center for Biotechnology Information.

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What do I need to know about nutrition?

Staying healthy is important when living with polycystic kidney disease (PKD), and you can take simple steps towards improving your nutrition and diet throughout a diagnosis. Dietary factors can play an important role in alleviating symptoms and slowing the progression toward renal failure. It is...

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How much water should I drink?

Adequate daily fluid intake is a requirement and particularly important for those living with autosomal dominant polycystic kidney disease (ADPKD), as significant dehydration can occur during periods of heavy exercise or extreme heat. The type and amount of supplements and foods to consume varies...

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Will weight loss affect or improve my ADPKD?

Maintaining a healthy weight is important for many reasons, including protection of kidney function. However, losing too much weight can cause other, possibly unintended complications. Consult your doctor before you take on any weight loss program.

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What’s an ideal weight or BMI for someone living with ADPKD?

For those living with ADPKD, there is no set formula for determining ideal body weight. This is partially due to the varying rate at which kidneys increase in size and weight and the effect of other complications caused by PKD. It is best to work with your doctor to determine an appropriate weigh...

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Can I drink beer or wine?

For those with ADPKD who are otherwise healthy, moderate alcohol intake is acceptable, but consider limiting to two drinks per day for men and one drink per day for women.

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Can I exercise if I have PKD?

Yes, exercise is important for cardiovascular health. In fact, participating in physical activity can help lower blood pressure, reduce stress, and generally enhance wellbeing in people living with PKD. Good exercises for people with ADPKD include sports where impact is minimized. These include s...

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What can I do to prevent, slow or stop the onset of PKD?

There is no cure for polycystic kidney disease (PKD), however there is a treatment option available in Canada that can help prevent cysts from enlarging. JINARC (tolvaptan), a twice-daily oral medication, was approved by Health Canada in 2015 for the treatment of autosomal dominant polycystic kid...

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How frequently should my kidney function be checked?

If you don’t have high blood pressure and kidney function is normal: At least once per year If you have high blood pressure or kidney function isn’t normal: At least twice per year If you are approaching kidney failure: More frequently. Check with your doctor

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How will I know when I need a transplant or dialysis?

If you are seen by a nephrologist on a regular basis, they will frequently request blood work. Your nephrologist will not only be looking at the creatinine level, but also how you are feeling (signs and symptoms) and other electrolyte imbalances. However, you may not experience any symptoms until...

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What are the signs of kidney failure?

Fatigue Poor appetite Nausea/vomiting Trouble concentrating (in severe cases, confusion) Dry, itchy skin, especially if phosphate is high Funny taste in your mouth; food tastes funny, metallic Muscle cramps at night Swelling in feet and ankles

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Why is blood pressure control important, and what types of medication can I take to avoid to reduce risk of additional damage?

High blood pressure may further damage and scar the kidney. In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes: Nonsteroidal anti-inflammatory agents Cold or allergy pills with pseudoephedrine  Over-the-counter diet pills Herbal ...

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How is dialysis done?

Dialysis is done by using a special fluid called dialysate. Dialysate is carefully controlled to pull wastes out of your blood without removing substances your body needs. There are two main types of kidney dialysis:  Hemodialysis Peritoneal dialysis (PD)

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How is ARPKD diagnosed?

Enlarged kidneys typically prompt a test for autosomal recessive polycystic kidney disease (ARPKD). In some babies, a prenatal ultrasound can detect enlarged kidneys as early as 18 weeks after conception. Families may also hear the kidneys look “echogenic” (emitting echo signals) during an ultras...

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What is the prognosis for children living with ARPKD?

The prognosis for children with ARPKD has improved dramatically over the last twenty years. Approximately 70 percent of newborns diagnosed with ARPKD survive the first month of life, and more than 85 percent survive to their tenth birthday. This is largely thanks to prenatal sonogram technology, ...

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Besides the kidneys, what else can ARPKD affect, and what is the biggest health concern?

Kidneys: Once an infant with ARPKD survives the critical neonatal period, kidney failure becomes the next most prominent life threatening issue. Severely enlarged kidneys also further limit lung function by preventing adequate lung expansion. ARPKD affects both kidneys and the liver, so affecte...

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Is there a relationship between PKD and cancer?

Although both PKD and cancer involve unregulated cell growth, there is no proven connection between the two diseases. 

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Is PKD contagious? How do other family members get it? 

PKD is not contagious. It is a genetic disease, which means you have it in your chromosomes.

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Where can I get tested to find out if I have PKD?

Click here for a genetic test centre and here for a list of genetic test sites around the world.

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What kind of changes can I expect in my child’s life after an ARPKD diagnosis?

Children with autosomal recessive polycystic kidney disease (ARPKD) can still live fulfilled lives, and maintaining a high quality of life can often be a top priority for parents and caregivers. Some of the most common challenges faced by children living with ARPKD include:  Academic challenges...

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What support is available for sharing the information about ARPKD with my child and family?

Knowing your child has been diagnosed with ARPKD can be very difficult. Sharing information is a very personal choice, and there are often many factors to consider. It can be helpful to answer questions in a simple, easy way, rather than providing an overwhelming amount of detail. The PKD Foundat...

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What is the risk of an APRKD diagnosis in my other or future children?

Parents of a child with ARPKD have a 1 in 4 chance of conceiving another child with the disease, and a 1 in 2 chance of being a carrier of the disease. Carriers of the ARPKD gene typically do not experience any symptoms of the disease. Prenatal diagnosis of ARPKD is possible in at-risk families t...

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What about sports? What are the physical limitations that accompany an ARPKD diagnosis?

Yes, children living with ARPKD can still participate in sports! Physical activity can help reduce blood pressure and generally improve one’s quality of life through socialization and play. Children can enjoy a wide variety of sports, including cycling, swimming and running in order to maintain p...

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Can families caring for a child with ARPKD take vacations?

Children and families living with chronic illnesses need to have fun and build memories like all other families. The primary consideration when it comes to traveling is of course the stability of your child’s health. However, if your child is stable, there is no reason why you can’t travel! As wi...

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What support is available for stress and financial management?

Many children’s hospitals typically have social workers assigned to kidney and liver patients that can help identify resources in your area and assist with the paperwork. Make sure to keep copies of all tests administered; many parents find it helpful to keep a large binder to organize records of...

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What do I need to know about nutrition?

Through a diagnosis of autosomal recessive polycystic kidney disease (ARPKD), adjustments may need to be made to ensure children are receiving the optimal amount of nutrients and vitamins to lead healthy lives. Dietary considerations play an important role in alleviating symptoms and slowing the ...

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How much water should my child drink?

Adequate daily fluid intake is an important part of staying hydrated for children living with ADPKD, especially during heavy exercise or extreme heat. The type and amount of supplements and foods to consume varies from person to person and it is always best to consult your doctor. Some parents ex...

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Will my child need a kidney transplant, and when?

Many children living with autosomal recessive polycystic kidney disease (ARPKD) will eventually require a transplant. The majority will receive transplants between the ages of 4 to 10.  It can be challenging for specialists to predict when a child will require a transplant, since the disease is d...

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Are there other options for kidney failure, such as dialysis?

Dialysis removes waste products from the body but it cannot replace all of the functions of a normal kidney. People living with ARPKD typically will undergo dialysis before a transplant. To further supplement dialysis, some important hormones that the kidney produces can be taken by pill or injec...

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How is dialysis done?

Dialysis is done with a special fluid called dialysate. Dialysate is carefully controlled to pull wastes out of blood without removing the substances your body needs. There are two main types of kidney dialysis:  Hemodialysis Peritoneal dialysis (PD)

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Why do dialysis treatments take so long?

Healthy kidneys work 24 hours a day, 7 days a week. Despite great strides in medicine and dialysis treatment, this procedure replaces only a small amount of kidney function. If your child is not getting adequate dialysis, they may begin to have symptoms of kidney failure, such as: Metallic taste...

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Can I or another family member donate my kidney?

The decision to donate or receive an organ from a family member is a deeply personal one, and it is important to educate yourself about this decision, as there are many factors to consider. Testing of potential donors will typically occur under the direction of the transplant team and can begin w...

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How is age a factor in receiving a kidney transplant?

Despite receiving transplants at a younger age, children with ARPKD experience similar survival as other kidney transplant patients. Transplant success rates are very good, and more than 85-90 percent of patients experience a successful transplant in the first year. Grafts also typically last the...

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