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ADPKD and Your Mental Health

When you have ADPKD, you might feel stressed about:

  • How fast your kidneys are declining
  • Pain and physical changes
  • Having to take a lot of medicines
  • How much dialysis costs, and how much time you spend getting it
  • Uncertainty about your future

You might also worry about:

  • Changes in your family and personal life
  • Not sleeping well
  • Not being able to do normal daily activities
  • Getting used to eating differently
  • Whether someone else in your family is at risk for ADPKD

It can be overwhelming, but you don't have to figure everything out on your own. Your doctor and other health care professionals are there to help you decide how to move forward.

It's important to stick to your treatment plan because there's no cure for ADPKD. And it's not possible to reverse kidney damage. Managing your condition eases stress in the long run.

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A Refresher on
Treatment Options

Your doctor might recommend a medicine called tolvaptan. It slows the growth of cysts and helps protect kidney function.

You might also be prescribed other medicines to lower blood pressure, ease pain, or treat infections. Keeping other health conditions in check may help with ADPKD symptoms and lower your risk of complications in general.

Joining a clinical trial for ADPKD treatments still in development might also be worth considering. If you're interested in participating, ask your doctor for suggestions. You can also search for them yourself online.

Talk to your doctor if you're worried about paying for medicines or dialysis. They should be able to connect you with a social worker or nurse navigator who can help you find financial support.

Other Ways to Protect Your Kidneys

These tips can help your condition from getting worse:

Follow a kidney-friendly diet. Your doctor or a registered dietitian can help you figure out what's OK to eat and what you should avoid.

Stay active to maintain a healthy weight. Try to exercise 30 minutes or more most days of the week.

Limit alcohol. Guidelines say men should stick with two drinks or less a day, and women should stick with one drink a day.

Stay hydrated. Your doctor may recommend you drink more than 3 liters of water a day unless the sodium level in your blood is too low or the damage to your kidneys is very bad.

Try to prevent or manage other health conditions. These include diabetes, high blood pressure, and UTIs.

Stop smoking. It can worsen symptoms and trigger other serious health conditions.

Take your medicine. It's important to take it exactly as your doctor tells you to. You can always ask your doctor if you're not sure.

ADPKD, Anxiety, and Depression

It's normal to feel some level of stress when you're dealing with health problems. But those feelings can sometimes lead to mental health conditions like anxiety or depression. If you have five or more of these symptoms for 2 weeks, talk to your doctor, nurse, or social worker.

Symptoms of Anxiety

  • Nervousness, restlessness, or tension
  • A sense that danger or doom is near
  • A higher heart rate
  • Rapid breathing
  • Sweating or shaking
  • Weakness or fatigue
  • Trouble concentrating or sleeping
  • Digestion problems
  • Uncontrollable worry

Symptoms of Depression

  • Feeling sad most of the day
  • Little to no interest in activities you usually enjoy
  • Less pleasure from activities you usually enjoy
  • Weight and appetite changes
  • Sleep issues
  • Feeling fatigued or without energy
  • Feeling worthless or thoughts about dying

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Your Outlook With ADPKD

Everyone's path is unique: You might have kidney failure soon after you find out you have ADPKD. Or your kidneys might work fairly well for the rest of your life.

You have about a 50% chance of needing dialysis or a kidney transplant by the time you're 60 years old.

But many people with ADPKD lead a full life.

By the Numbers

Did you know?

ADPKD, Family, and Friends

ADPKD doesn't just affect you. It can also affect your significant other, family members, and friends.

You might have emotional ups and downs. You may have to cancel or change plans when you don't feel well. You might lose interest in having sex.

Your friends and family are likely worried about you and want to offer support. Try to talk openly about your ADPKD and how you feel about it.

These tips may help:

Share the facts. Tell them you may have emotional ups and downs from medicines, chemical imbalances, and stress. Reassure them and let them know you can still lead a full, active life.

Encourage them to get screened. Explain to family members that ADPKD is inherited, so they might have it, too.

Be open to their questions. Give them time to process the information.

Ways your family and friends can help support you include:

  • Doing household tasks like grocery shopping or cleaning
  • Going with you to doctor appointments and treatments
  • Keeping you on track with your treatment
  • Offering a shoulder to lean on when you're having a hard time

Ask for help when you need it. That's what friends and family are for.

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What to Know About
Genetic Testing

Why should I have genetic testing?

ADPKD and Work

ADPKD may affect your work life.

Going to work as usual may be challenging if you have symptoms of ADPKD or side effects from medicine. You may need extra time off for doctor appointments. You may also need to change your regular work schedule so you can focus on your well-being.

Here are some of the challenges people with ADPKD have at work:

  • Pain makes regular tasks harder.
  • Restless legs make it hard to sit down for a long time.
  • Side effects make you use the bathroom more often.
  • Fatigue makes it hard to focus and think clearly.
  • Stress and pressure make solving work problems and answering questions difficult.

If you're having trouble at work, talk with your employer. You have legal protections under the Americans with Disabilities Act.

Your employer has to make reasonable accommodations to make it easier for you to do your job.

You can also talk about the possibility of taking disability leave.

Try these tips for working with your employer:

  • Set up a meeting.
  • Share the facts about ADPKD and how it affects your work life.
  • Offer specific suggestions for adjustments.
  • Help your employer understand how to create a supportive work environment for you.

If it's a reasonable accommodation, your employer is required to make it work. If it's too big a burden, try to find an accommodation that works for both of you.

Work Accommodations
for ADPKD

Examples of reasonable accommodations to make your work life easier with ADPKD:

Ways to Manage Stress With ADPKD

Learn More About ADPKD

How Does ADPKD Progress?
Learn More

Exploring the Family Roots of ADPKD
Learn More

Managing Pain with Autosomal Dominant Polycystic Kidney Disease (ADPKD)
Learn More

Reviewed By Minesh Khatri, on Nov 01 2023

American Heart Association: “Working Out to Relieve Stress.”

American Kidney Fund: “Mental health and kidney disease.”

Mayo Clinic: “Meditation: A simple, fast way to reduce stress,” “Support groups: Make connections, get help.”

National Institute of Diabetes and Digestive and Kidney Diseases: “Eating, Diet & Nutrition for Polycystic Kidney Disease,” “What Is Polycystic Kidney Disease?”

National Kidney Foundation: “Studying Sleep's Impact on Kidney Health.”

PKD Foundation: “Managing Mental Health and PKD.”