Table of ContentsView AllTable of ContentsEmotionalPhysicalSocialPractical
Table of ContentsView All
View All
Table of Contents
Emotional
Physical
Social
Practical
Over time,autosomal dominant polycystic kidney disease(ADPKD) may lead tokidney failure. Fortunately, ADPKD kidney failure can be delayed, or even prevented, with the manyoptions 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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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 journalNephrology Dialysis Transplantationassessed 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 ondialysisfor 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.
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:
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 worsenADPKD symptoms.
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.
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—abrain 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 calledfloppy valve syndrome.
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 severefatigue. 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 alsosigns 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) arebacterial infectionsthat 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:
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:
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 asurgical 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 fromover-the-counter pain relieversthat 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.
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 likeAmerican Psychological Association (APA) Psychologist Locatorand 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.
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 akidney transplantdown 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.
9 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Simms RJ, Thong KM, Dworschak GC, Ong AC.Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease.Nephrol Dial Transplant. 2016;31(7):1130-1140. doi:10.1093/ndt/gfv299Kumar C.Psychosocial well-being of individuals. 2020; In: Leal Filho W, Azul AM, Brandli L, Özuyar PG, Wall T, eds.Quality Education. Springer International Publishing;2020:676-686.National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).What is polycystic kidney disease?National Kidney Foundation.Polycystic kidney disease.Sanchis IM, Shukoor S, Irazabal MV, et al.Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease.Clin J Am Soc Nephrol. 2019;14(8):1151-1160. doi:10.2215/CJN.14691218Cleveland Clinic.Mitral valve prolapse.Chapman AB, Rahbari-Oskoui, Bennet WM.Autosomal dominant polycystic kidney disease (ADPKD): evaluation and management of urinary tract infections. UpToDatePolycystic Kidney Disease Foundation.What are the symptoms of ADPKD?Casteleijn NF, Visser FW, Drenth JP, et al.A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease.Nephrol Dial Transplant.2014;29(Suppl 4):iv142-iv153. doi:10.1093/ndt/gfu073
9 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Simms RJ, Thong KM, Dworschak GC, Ong AC.Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease.Nephrol Dial Transplant. 2016;31(7):1130-1140. doi:10.1093/ndt/gfv299Kumar C.Psychosocial well-being of individuals. 2020; In: Leal Filho W, Azul AM, Brandli L, Özuyar PG, Wall T, eds.Quality Education. Springer International Publishing;2020:676-686.National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).What is polycystic kidney disease?National Kidney Foundation.Polycystic kidney disease.Sanchis IM, Shukoor S, Irazabal MV, et al.Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease.Clin J Am Soc Nephrol. 2019;14(8):1151-1160. doi:10.2215/CJN.14691218Cleveland Clinic.Mitral valve prolapse.Chapman AB, Rahbari-Oskoui, Bennet WM.Autosomal dominant polycystic kidney disease (ADPKD): evaluation and management of urinary tract infections. UpToDatePolycystic Kidney Disease Foundation.What are the symptoms of ADPKD?Casteleijn NF, Visser FW, Drenth JP, et al.A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease.Nephrol Dial Transplant.2014;29(Suppl 4):iv142-iv153. doi:10.1093/ndt/gfu073
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Simms RJ, Thong KM, Dworschak GC, Ong AC.Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease.Nephrol Dial Transplant. 2016;31(7):1130-1140. doi:10.1093/ndt/gfv299Kumar C.Psychosocial well-being of individuals. 2020; In: Leal Filho W, Azul AM, Brandli L, Özuyar PG, Wall T, eds.Quality Education. Springer International Publishing;2020:676-686.National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).What is polycystic kidney disease?National Kidney Foundation.Polycystic kidney disease.Sanchis IM, Shukoor S, Irazabal MV, et al.Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease.Clin J Am Soc Nephrol. 2019;14(8):1151-1160. doi:10.2215/CJN.14691218Cleveland Clinic.Mitral valve prolapse.Chapman AB, Rahbari-Oskoui, Bennet WM.Autosomal dominant polycystic kidney disease (ADPKD): evaluation and management of urinary tract infections. UpToDatePolycystic Kidney Disease Foundation.What are the symptoms of ADPKD?Casteleijn NF, Visser FW, Drenth JP, et al.A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease.Nephrol Dial Transplant.2014;29(Suppl 4):iv142-iv153. doi:10.1093/ndt/gfu073
Simms RJ, Thong KM, Dworschak GC, Ong AC.Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease.Nephrol Dial Transplant. 2016;31(7):1130-1140. doi:10.1093/ndt/gfv299
Kumar C.Psychosocial well-being of individuals. 2020; In: Leal Filho W, Azul AM, Brandli L, Özuyar PG, Wall T, eds.Quality Education. Springer International Publishing;2020:676-686.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).What is polycystic kidney disease?
National Kidney Foundation.Polycystic kidney disease.
Sanchis IM, Shukoor S, Irazabal MV, et al.Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease.Clin J Am Soc Nephrol. 2019;14(8):1151-1160. doi:10.2215/CJN.14691218
Cleveland Clinic.Mitral valve prolapse.
Chapman AB, Rahbari-Oskoui, Bennet WM.Autosomal dominant polycystic kidney disease (ADPKD): evaluation and management of urinary tract infections. UpToDate
Polycystic Kidney Disease Foundation.What are the symptoms of ADPKD?
Casteleijn NF, Visser FW, Drenth JP, et al.A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease.Nephrol Dial Transplant.2014;29(Suppl 4):iv142-iv153. doi:10.1093/ndt/gfu073
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