To stay healthy and manage autosomal dominant polycystic kidney disease (ADPKD), work with your doctor and follow these tips for taking good care of yourself.
Eat Well
While there’s no specific diet recommended for ADPKD, eating the right foods can help you stay healthy and prevent complications. Making good choices may help slow cyst growth, keep diabetes and heart problems at bay, and speed up recovery time from treatments like dialysis and transplants.
You may need to eat less salt and less protein, eat more foods rich in omega-3 fatty acids, opt for high-fiber carbohydrates, and limit potassium-rich foods.
Talk to your doctor about your diet. They’ll make suggestions based on your test results. A registered dietitian experienced in kidney disease can create an eating plan that’s right for you and includes foods you like.
Be Active
Exercise helps you feel good and stay at a healthy weight. It also lowers your blood pressure, keeps stress under control, and improves your muscle strength and heart health.
Choose a type of exercise that feels good and you enjoy doing. Do non-jarring activities like walking, biking, or swimming. Try to work out on a regular basis.
Remember to stay hydrated.
Some contact sports like football, rugby, basketball, hockey, boxing, and kickboxing are riskier. Repetitive sports like horseback riding and cross-country biking can also damage your kidneys.
Before you start any exercise program, clear it with your doctor. Tell your doctor if you have blood in your urine or back, side, or abdominal pain.
Don’t Smoke
Avoid smoking. It’s a known cause of cardiovascular disease and can lead to complications with kidney disease. It may speed up the progress of ADPKD and lead to kidney damage.
Manage Your Pain
It’s normal to feel pain from ADPKD. You may feel it in your back, your side, or your stomach. Everyone has a different tolerance level.
Doctors often take a stepladder approach to pain management. They start you off with acetaminophen or other medication for mild or moderate pain. If that doesn’t help, they might refer you to a pain clinic.
Pain clinics have many tools for managing pain, like medical, psychological, and interventional therapies. They may suggest a mix of methods, like biofeedback and joining a support group. Try different things to find what works best for you.
To find a pain clinic, ask your doctor or nephrologist. Many hospitals have pain clinics that are part of the anesthesiology department.
Connect With Others
Getting out and getting involved with others can help you feel good.
Join a support group. You can talk about your feelings, share stories, and get tips from others living with ADPKD.
Join an annual walk for PKD. Raise awareness about the disease on a local or national level. Join a PKD organization and participate in chapter activities or fundraisers. Being involved can also help you learn about new advances and connect with others.
Go online to find support groups, online communities, and answers to your questions about ADPKD.
Take a Break
It may be a challenge to manage your symptoms while balancing work, family, relationships, and other responsibilities.
Recognize when you feel stressed, worried, or overwhelmed. Do something that helps you relax or feel better. Take a break. Try a new hobby. Take a weekend getaway. Talk to someone.
Acknowledge Your Feelings
It’s normal to worry about your health, your future, and how your family may be affected. You may feel grief or a sense of loss for the life you had before ADPKD.
Give yourself time to process your grief. Taking time to deal with it will help you move forward when you’re ready.
Talking to friends, family, or others living with ADPKD about your feelings may help.
Get Help
When you have a chronic illness like ADPKD, it’s normal to feel depressed or anxious. Talk to your doctor if you feel irritable, have trouble sleeping, lose your appetite, have trouble paying attention, don’t feel interested in anything, or if anxiety gets in the way of daily life.
A professional therapist or counselor can give you tools to manage anxiety and depression, help you work through your feelings, and teach you skills to live better with ADPKD.