Living With Autosomal Dominant Polycystic Kidney Disease

Coping, Support, and Living Well

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Autosomal dominant polycystic kidney disease (ADPKD) is an inherited kidney disease that causes painful kidney cysts. It is one of two types of polycystic kidney disease. Additional symptoms of the condition are back and side pain, blood in the urine, high blood pressure, headaches, kidney and bladder infections, and kidney stones.

Over time, this condition may lead to kidney failure. Fortunately, ADPKD kidney failure can be delayed, or even prevented, with the many options available to treat the condition. Additionally, there is a lot you can do to manage symptoms, slow disease progression, and manage other aspects of the disease.

This article will discuss the emotional, physical, and social effects of ADPKD and how you can better manage these effects. 

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Emotional

Living with ADPKD can take a toll on a person's mental and emotional health. Research on the psychological impact of ADPKD has found the emotional effects of the condition, especially on quality of life, are often misunderstood.

One study reported in 2016 in the journal Nephrology Dialysis Transplantation assessed the overall quality of life, mood, perceived social support, and psychological risk of people with ADPKD. Questionnaires went to 349 people with chronic kidney disease not on dialysis for kidney failure to study the impact of coping with ADPKD.

Study participants were asked about their quality of life, depression, perceived social support, and genetic psychological risk. The results of the study found people with severe symptoms of ADPKD were experiencing a reduced quality of life and increased psychological risk.

Depression was reported in 22% of the study participants, and 62% reported feeling guilt about passing ADPKD on to their children.  Many of the female study participants were also reporting an "overall poorer psychosocial well-being."

What Is Psychosocial Well-Being?

Psychosocial well-being refers to "physical, economic, social, mental, emotional, cultural, and spiritual” health impairments.

Additional risk factors for difficulty coping with ADPKD include increasing age, lower kidney function, larger kidneys, and loss of a first-degree relative (parent, child, or full sibling) to ADPKD. The study’s authors concluded there was a need for addressing coping as part of ADPKD care, along with individual and family support.

Maintaining good emotional health can be a struggle. Depending on the severity of ADPKD and whether there is kidney failure, you may face many different stressors. Some of these stressors might include:

  • Costs and time constraints for dialysis
  • Costs for other treatments
  • Not feeling better despite following your treatment plan
  • Feeling like a burden to others
  • Dealing with kidney and other ADPKD pain
  • Struggles with sleep due to pain and other disease symptoms
  • Eating restrictions
  • Inability to work or difficulties on the job
  • Worries about how your care, including dialysis, might affect your family, work, social life, or your relationship with an intimate partner

ADPKD and the medicines used to treat can cause side effects, which can make you feel unwell and further add to the emotional toll of the condition.  And when you are feeling emotionally and mentally unwell, this can worsen ADPKD symptoms.

What you are feeling is quite normal. These emotions are also experienced by others living with ADPKD. A kidney condition can take a lot from you, so don’t beat yourself up for feeling angry, sad, scared, or guilty. Live in the moment and reach out for support and help when you are struggling the most.

Physical

You may not experience any signs or symptoms of ADPKD until kidney cysts are at least half an inch or larger. When you do experience symptoms, these are often related to pain, high blood pressure, and kidney failure. It will be important to manage these symptoms to make it easier to cope and also to reduce disease progression.

Headaches

Many people with ADPKD experience headaches. The cause of most headaches in ADPKD is high blood pressure. High blood pressure can lead to kidney damage, so it is important to treat the condition.

In addition to medicines prescribed by your doctor for high blood pressure, it is important to follow a low-salt, low-fat diet rich in fruits, vegetables, lean proteins, legumes, and low-fat dairy. 

Headaches often resolve when blood pressure is at normal levels. Your doctor might also recommend Tylenol (acetaminophen) to manage headaches or prescribe something stronger if acetaminophen doesn’t help resolve headaches.

While rarer, frequent headaches might be a sign of a serious ADPKD complication—a brain aneurysm, which is a bulge, or ballooning, of a blood vessel in the brain.

A 2019 study found pre-symptomatic intracranial (brain) aneurysms in 9% of people with ADPKD. The highest risk was in people with a family history of brain aneurysms, those who smoke, and/or have high blood pressure. They also found the rupture rate for people with ADPKD was about five times higher than that of the general population.

If you are someone with ADPKD who is at a higher risk for a brain aneurysm, reach out to your doctor for regular screenings or if you experience warning signs like frequent or unusual headaches.

A Fluttering Or Pounding Chest

About a quarter of people with polycystic kidney disease experience fluttering or pounding in their chest. Doctors think this is related to a heart condition called floppy valve syndrome.

With polycystic kidney disease, this symptom is usually self-limiting and goes away on its own. However, if this symptom gets worse or is accompanied by breathing troubles or chest pain, you should reach out to your doctor.

Floppy valve syndrome is often manageable without medication or surgery. Eating healthy, staying active, and stress management can help you manage this symptom and potentially prevent it from getting worse.

Fatigue

Much like other chronic conditions, ADPKD can cause severe fatigue. This isn’t the type of fatigue that results from not sleeping well or doing a physically exhausting task. This type makes you feel exhausted and drained for no reason. 

It can be hard to accept a more slow-paced lifestyle because of fatigue. But it is important to listen to your body. When you are fatigued, this is a sign that you need to rest and adjust activities to the amount of energy you have.

If fatigue becomes severe or starts affecting your ability to care for yourself or your loved ones, reach out to your doctor about medicine or other options to improve energy levels.

Nausea and Vomiting

If your kidneys are failing, you may experience an increase in nausea and vomiting. These are also signs of kidney stones.

Nausea can be managed through diet changes, including avoiding trigger foods (i.e., fried, greasy, or sweet foods), eating smaller, more frequent meals, and eating lighter, bland foods (like saltine crackers and plain bread). 

If nausea is affecting you on most days, or if you are unable to keep food down, talk to your doctor about medication to help manage these symptoms, along with coping strategies.

Urinary Tract Infections

Urinary tract infections (UTI) are bacterial infections that occur in the bladder or kidneys. UTIs are common in the general population, but they affect people with ADPKD more frequently, especially females.

Symptoms of UTI might include:

  • Pain and burning with urination
  • Frequent urination
  • The urgent need to urinate even when only a small amount of urine has passed
  • Fever and/or chills
  • Flank pain—pain on either side of the lower back between the pelvis and the ribs

Drink plenty of fluids, especially plain water, to reduce the number of UTIs you experience and help improve UTI symptoms. It might also be wise to avoid caffeine to prevent dehydration, especially coffee.

UTIs are generally treated with antibiotics. You can take acetaminophen to help manage pain and fever. If you experience frequent UTIs, your doctor might prescribe a daily antibiotic to potentially ward off future UTIs.

Kidney Stones 

Around 20 to 30% of people with polycystic kidney disease will experience kidney stones. Kidney stones only affect 1% to 2% of the general population. Kidney stones are hard deposits composed of minerals and salts that form inside the kidneys.

Symptoms of a kidney stone might include:

  • Sharp pain in the side, back, and below the ribs
  • Pain that radiates from the abdomen to the groin
  • Pain that comes in waves and fluctuates in intensity. Pain type and intensity can change as the stone passes through the urinary tract.
  • Bladder symptoms, including pain and burning with urination, pink, red, or brown color urine, cloudy or foul smelly urine, frequent need to urinate, and urinating in small amounts
  • Nausea and vomiting
  • Fever and chills, if an infection is present.

Most kidney stones are passed through urine, and your doctor can prescribe medicine for pain management. However, bigger stones may need to be treated with a surgical procedure.

Pain

Pain from ADPKD is common and can be felt in the abdomen, sides, and back. You may also experience tenderness in the same areas.

There are many reasons for ADPKD pain, including large cysts and bleeding cysts. Pain can also be a sign of polycystic liver disease, which affects some people with ADPKD.  This is a condition that causes cysts to grow throughout the liver.

You might be able to get pain relief from over-the-counter pain relievers that contain acetaminophen.

Non-steroidal anti-inflammatory drugs (NSAIDs), such as Advil (ibuprofen) and Aleve (naproxen), are generally not recommended for people with ADPKD because they might affect kidney function and interfere with blood pressure. You should check with your doctor about whether it is safe for you to use an NSAID to manage pain related to ADPKD symptoms.

If you experience severe pain related to kidney stones or a UTI, treating the underlying cause can bring about relief.  However, if the pain is severe, your doctor might prescribe a stronger pain reliever, such as codeine or tramadol.

Social

It is normal to struggle emotionally from time to time, but when these feelings start to affect you daily or become something more serious, It might be time to do something. After all, your emotional health is just as important as your physical health, and there is no shame in asking for help.

Counseling

Talking to a mental health professional can make it a lot easier to cope with the effects of ADPKD and feel less overwhelmed. Therapy or counseling involves talking to a mental health professional about your feelings, thoughts, and behaviors as they relate to living with ADPKD.

If you don't know where to start, ask to meet with your healthcare team's social worker or ask for a referral to one. Social workers are trained to connect you to local resources to help you to manage your care. They can also be a helpful resource for communicating your emotional and mental health needs to your kidney care team.

Other sources to get a referral to or recommendation of a mental health provider include your insurance company, primary care professional, family members, friends, religious leaders, and professional organization website directories like American Psychological Association (APA) Psychologist Locator and SAMHSA Behavioral Health Treatment Services Locator.

Family and Friends

Your friends and family can also be a source of comfort and support. Find people you can trust to share your feelings with and who can offer encouragement, support, and help when you need it.

Try to communicate clearly with loved ones about your condition, especially when you need help with things like getting to appointments, household chores, or child care.  Your loved ones often want to help, but they won’t know where to start without your input.

Support Groups

Support groups can serve as a safe space to share what you are feeling with others who are also living with ADPKD. A support group can either be in person or online.

Many organizations offer support groups for people with kidney conditions, including:

Your healthcare team might also have information on support groups in your area. If they are part of a large healthcare system, that system may have its own kidney disease support groups.

Practical

ADPKD is a progressive condition, which means it will get worse with time. Your treatments will also change with time. Make sure you have a good medical team on your side to help you deal with all these changes.

You will want to have the following people on your healthcare team:

Not all of these people will be involved with your care at the same time and your team will change as your needs change. Having several healthcare professionals working with you offers the best opportunity to potentially slow down kidney failure or the need for dialysis or a kidney transplant down the road.

Summary

Living a progressive condition like autosomal dominant polycystic kidney disease can be overwhelming and challenging. Every person’s experience with ADPKD is different, but it is quite normal to feel confused, angry, or scared.

Fortunately, there is plenty you can do to manage its emotional, physical, and social effects. This includes getting support from loved ones or a support group, talking to a therapist if you are struggling to cope, and reaching out to your healthcare team to help you manage symptoms and reduce the effects of the condition.

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9 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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