Autosomal dominant polycystic kidney disease (ADPKD) makes cysts grow in your kidneys. These cysts, or pockets of fluid, make it hard for kidneys to filter out waste from the body. ADPKD is the most common type of kidney disorder passed down through families.
Some people with ADPKD have kidney failure and need dialysis or a kidney transplant. But it’s possible to keep this condition from getting worse.
Tips for Living With ADPKD
Maintain a healthy weight. Extra pounds can make ADPKD get worse faster. Your doctor or nutritionist can recommend a healthy diet to help keep your weight under control. More research is needed, but one small study found that fasting (only eating within an 8-hour window) can help you lose weight and slow the advance of ADPKD.
Eat a low-salt diet. Too much sodium makes your kidneys work harder, which can quickly make symptoms of ADPKD worse. Eat less than 2,000 milligrams of sodium daily unless your doctor suggests a different amount.
Watch the phosphorus you eat. ADPKD can make phosphorus build up in your blood. Over time, too much of this mineral can damage your bones and organs. To avoid having too much phosphorus, eat more fruits and vegetables instead of packaged foods. When you buy boxed or canned foods, check the labels and avoid anything that has added phosphorus or ingredients starting with “pho.”
Manage your blood pressure. One way to lower your risk of kidney failure (and prevent heart disease) is to keep your blood pressure within a normal range. Treating high blood pressure with a healthy, low-sodium diet and exercise is possible. But sometimes, you might need a prescription for an angiotensin-converting enzyme (ACE) inhibitor, a medicine that safely lowers it.
Find a physical activity you like. Try to be active for at least 30 minutes every day. Finding an activity you enjoy, like walking with a friend or working in your garden, can make it easier to stick to a daily routine. Make sure to avoid contact sports, like football, which could injure your kidneys.
Quit smoking. Try not to use tobacco of any kind. Talk to your doctor if you need help to quit smoking.
Limit alcohol. If you drink alcohol, having less is better. Guidelines recommend that men have no more than two drinks daily and women have no more than one drink daily.
Drink enough water. It’s essential to have plenty of fluids throughout the day. Try to drink eight to 10 glasses of water daily. You may need to drink even more water in hot weather or when you’re active. Avoid drinks with caffeine because they make your kidneys work harder.
Take medicines that can help. A medicine called tolvaptan can help slow down kidney decline. Your doctor may also prescribe other medicines to relieve pain and treat any infections or other health issues that might come up. Make sure to take all medicine exactly as prescribed.
If the cysts are causing too much pain, your doctor might suggest surgery to remove them. Surgery can make you more comfortable but won’t help your kidneys work better. At some point, your doctor may talk to you about dialysis or a kidney transplant.
Managing the Challenges of ADPKD
Here are some challenges you might encounter when living with ADPKD and some tips on dealing with them.
Having to change your diet. What you eat every day is vital to how your kidneys function. A registered nutritionist or dietitian can help you figure out how to manage your food portions, handle cravings, and explore healthier meals.
Chronic pain. You can often manage mild pain with acetaminophen. Avoid NSAIDs (nonsteroidal anti-inflammatory drugs) like ibuprofen because they can damage your kidneys more. If these over-the-counter options don’t give you enough relief, your doctor can prescribe other medicines.
Frequent urinary tract infections (UTIs). ADPKD makes it more likely for you to get infections in your bladder, kidneys, or cysts. You can reduce your risk by showering instead of taking baths and wiping from front to back after you use the toilet.
Kidney stones. A kidney stone is a hard mass that forms in your kidneys. Doctors usually recommend drinking about 3 to 4 liters of water daily to see if you can pass smaller stones on your own. Sometimes, you also need medicine to help you pass a stone. To pass larger stones, you might need extra help. For instance, extracorporeal shock-wave lithotripsy treatment uses shock waves to break apart kidney stones.
Genetic and family planning concerns. A genetic counselor can test your genes and explain what the results mean if you’re worried about passing down ADPKD to any children you might have. Sometimes, ADPKD can affect how well sperm functions. A urologist (a doctor focusing on the urinary tract and male reproductive system) can help if you are worried that your sperm aren’t mobile enough.
Staying well during pregnancy. Many people live with ADPKD and have a trouble-free pregnancy. Still, ADPKD raises the risk for preeclampsia, which is high blood pressure during or after pregnancy. Keep in close touch with your doctor and follow through with all your visits if you are pregnant and living with ADPKD. It’s also essential to know how to reach your doctor or a care team member if you have questions or concerns.
Covering out-of-pocket costs. ADPKD isn’t a cheap illness to manage. Find out what your health plan covers and what you are responsible for paying yourself. Talk to your doctor or contact www.cms.gov to find ways of reducing your out-of-pocket costs. You can also consider joining a clinical trial at www.clinicaltrials.gov. Being part of one of these studies gives you access to new treatments, often at no cost.
Managing stress. Living with ADPKD can be stressful. An online or in-person support group can make a big difference. Talking to others with the same issues you have can help you feel less alone. You can also learn how others with ADPKD deal with setbacks.
Show Sources
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SOURCES:
American Kidney Fund: “Polycystic kidney diseases (PKD) symptoms, treatment & causes,” “How to prevent high phosphorus with kidney disease.”
Kidney Research UK: “Hydration for Kidney Health.”
Mayo Clinic: “Kidney stones,” “Polycystic Kidney Disease.”
National Institute of Diabetes and Digestive and Kidney Diseases: “Autosomal Dominant Polycystic Kidney Disease.”
National Kidney Foundation: “Polycystic Kidney Disease.”
National Health Service (U.K.): “Autosomal dominant polycystic kidney disease – Treatment.”
National Organization for Rare Disorders: “Autosomal Dominant Polycystic Kidney Disease.”
The Patient: “Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review.”
PKD Foundation: “Phosphorus and PKD: What You Need to Know,” “What are the symptoms of ADPKD?”
PKD Foundation of Canada: “ADPKD Living Questions.”
UCHealth: “Can fasting slow the progression of the genetic form of kidney disease, ADPKD?”
