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Kidney Disease: Caring for a Chronic Illness
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AAKP is a national organization directed by kidney patients for kidney patients. This is an extensive site with information about specific conditions, treatments, lifestyle improvement, caregiving and the AAKP HealthLine, is a free, one-hour conference call designed to educate you on a variety of topics affecting kidney patients and their families. Conference calls feature kidney healthcare experts from across the country.
AKF provides health education to people with, or at-risk for, kidney disease and direct, treatment-related financial assistance to kidney patients who are in need. The site includes information that ranges from risk factors to living with kidney failure and paying for treatment. AKF is creating a database of stories from people who've been affected by kidney disease.
Family Caregiver Alliance is one of the largest and oldest organizations in the US devoted solely to caregivers. The web site includes information, free publications, and an online caregiver support discussion group. See their article on Taking Care of YOU: Self-Care for Family Caregivers.
KUFA is a national, not-for-profit organization dedicated to helping people with kidney and urologic diseases and individuals waiting for organ and tissue transplants. The site includes a library of articles on kidney disease and kidney health. Patient resources include emergency grants, help in finding a nephrologist or urologist or locating an organ transplant center in your area, and information on clinical trials in nephrology and urology and new FDA drug approvals. They also have a section just for kids.
Kidney School is an educational project of the Life Options Rehabilitation Program. Supported by an unrestricted educational grant from Amgen Inc. and administered by the Medical Education Institute. It is an interactive, web-based learning program in 20-minute modules designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible.
NAC is a joint venture of several private and governmental agencies. They conduct research, develop national projects, and work to increase public awareness of the issues of family caregiving for older Americans. The site includes information for caregivers on how to take care of themselves while providing care. Check the Publications section for online brochures.
NKUDIC is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services. The site includes and "A to Z" list of topics and titles, information on clinical trials and Spanish language publications.
Caregiver's Handbook (from the 90-minute program Caring for Your Parents) With Eyes Wide Open (information on caregiving, grief, difficult decisions and what may lie beyond death)
Several other episodes of Second Opinion also explore topics that are relevant to kidney disease and caregiving. They include: Hypertension (Episode 105) Incontinence (Episode 106) Diabetes (Type 2) (Episode 301) Kidney Stones (Episode 310) End of Life (Episode 313) Alzheimer's Disease (Episode 505) Caregiver Burnout (Episode 507)
Episode number: 
506

While chronic kidney disease continues to rise in the U.S., Second Opinion explores the many issues faced when caring for a loved one with a chronic disease.

Chronic illness has been described as a journey made by an unwilling traveler.  For those living with chronic kidney disease (CKD), it's a journey of strong emotions, uncertainty, shifting roles, changing relationships, compromise, complex choices, and often a more profound awareness of yourself and the people who are important to you.  It's not a trip you can take alone.  When CKD progresses toward kidney failure, it will also impact the day-to-day lives of your family and loved ones.   

What do your kidneys do?

Before you can understand what kidney disease is, you need to understand what your kidneys do. 

Most people are born with two kidneys – nature's way of giving you a back-up system in case one is damaged.  Each kidney contains over a million tiny nephrons that contain small blood vessels that filter the blood to remove waste products and excess water.  Much of this waste is produced by the body as it metabolizes the food you eat.  Your entire blood volume gets filtered approximately 20-25 times each day and more than 2 quarts of waste are filtered out and sent to the bladder to be excreted as urine. The kidneys also help regulate levels of various salts and minerals in the blood, such as calcium, sodium, phosphate and potassium; which regulate the body's acid-alkaline balance; and secrete hormones that help your body regulate blood pressure, make red blood cells and promote strong bones.  

What is kidney disease?

Kidney disease occurs when the kidneys become damaged and the nephrons lose their ability to filter the blood.  Small declines in kidney function pose no health problems. The body only requires the presence of one fully functioning kidney to do its job successfully.  When renal function drops to 25 percent or below (less than half of one kidney functioning properly), serious health problems begin to emerge.   

There are three main types of kidney disease:

  • Hereditary kidney disease is part of your genetic make-up, though it may not present itself in every generation.  One of the most common forms of inherited kidney disease is Polycystic Kidney Disease (PKD). 

  • Congenital (present at birth) kidney disease involves malformations in the kidney, bladder and surrounding organs, causing pressure on the kidneys or disabling them.

  • Acquired (not present at birth) kidney disease is the most common form of kidney disease and is most frequently of the chronic variety. 

The causes of kidney disease are not always knownDoctors call this generic kidney disease or failure.

There are 3 degrees of kidney disease:

  • Acute renal failure (ARF), now also referred to as acute kidney injury (AKI), is an abrupt drop in the blood cleaning ability of the kidneys over a period of hours or days, and generally happens as a result of severe illness, injury or poisoning.  ARF can lead to the permanent loss of kidney function if not treated immediately.  However, if the kidneys are not severely damaged, renal failure may be reversed.

  • Chronic kidney disease (CKD) is the gradual loss of kidney function and the most common form of kidney disease.  It usually occurs over a period of months to years. CKD is considered a "silent killer" because there are few symptoms in early stages.  Too often, by the time a person realizes they have a problem, significant damage has already been done.  In fact, people may not know they have kidney disease until they're facing kidney failure. Even with an early diagnosis of CKD, the condition is often irreversible. While there's no cure for CKD, with early diagnosis it may be possible to stop its progress or at least slow down the damage. The two most common causes of CKD are diabetes and high blood pressure (hypertension). Among other causes are obstruction of urine flow, arteriosclerosis, kidney infection and inflammation, and overexposure to toxins and to some medications. 

  • End-stage renal disease (ESRD) occurs in the late stages of chronic kidney disease (CKD). It's the total or near-total loss of kidney function, meaning your kidneys are unable to perform well enough to keep you alive.  Individuals with ESRD will need to undergo dialysis or have a kidney transplant to survive.  The amount of time between when an individual is first diagnosed with CKD and when he or she requires dialysis or a transplant is different for each person. It could be a few months or it could be many years depending on when the kidney failure is first detected, the extent of the damage, and how quickly kidney function declines.  

Chronic kidney disease is classified into five stages of increasing severity using a test called a glomerular filtration rate (GFR) – a measurement of how many milliliters (ml) of waste products your kidneys can filter in a minute: 

  • Stage 1:  Slight kidney damage with normal or increased filtration.  There are usually no symptoms to indicate the kidneys are damaged.  (GFR >90)

  • Stage 2:  Mild decrease in kidney function.  There are usually no symptoms to indicate the kidneys are damaged. (GFR 60 – 89)

  • Stage 3:  Moderate decrease in kidney function.  Most patients continue to have no symptoms related to their kidney disease.  Symptoms may start to appear including fatigue due to the anemia that can develop at this level of kidney disease.  Some patients may develop swelling in the lower legs, hand or face around the eyes or shortness of breath but the majority of patients do not develop problems with fluid retention until stage 5.

  • Stage 4:  Severe decrease in kidney function.  Despite the low level of kidney function, many patients continue to have no symptoms.  Some will develop fatigue, mainly related to anemia. Itching (pruritis) may develop at this stage due to high phosphorus levels in the blood.  Patients may be more prone to fluid retention (see Stage 3) with more swelling in their legs.  Bloodwork may start to reveal an inability to excrete adequate amounts of potassium from the blood and extra medications may be required to do so.  Vitamin D levels are often low and require supplementation at this level.  (GFR 15 – 29)

  • Stage 5:  Kidney failure (or end-stage renal failure) is the total or near-total loss of kidney function.  Uremic (i.e. "urine in the blood") symptoms usually develop at this stage.  Most patients begin to note fatigue, weakness, no appetite or a "metallic" taste to food.  As the kidney function gets even lower, nausea and vomiting and confusion or difficulty concentrating may develop.  Other symptoms may include itching, restless legs syndrome and numbness or tingling in the toes or fingers.   The amount of urine formed may decrease, causing some swelling of the legs and around the eyes, or shortness of breath due to fluid collecting in the lungs, but many people continue to make adequate amounts of urine even after starting dialysis.  (GFR < 15)

Many of the symptoms of kidney disease may be indicative of other illnesses.  If you have one or more of them, the only way to get an accurate diagnosis is to see your doctor.

Chronic kidney failure can affect almost every part of your body.  It can cause anemia, hypertension, acidosis, disorders of cholesterol and fatty acids, impotence, damage to the central nervous system, decreased immune response and degenerative bone disease.  People with kidney disease are at increased risk of heart attack or stroke. 

If you have high blood pressure, diabetes or a family history of kidney problems, have your kidney function evaluated. Your doctor can perform tests to determine if your kidneys are functioning properly. An early diagnosis can mean a longer, healthier and more independent life.


Quick Facts

For quick facts on caregiving, go to Second Opinion, Caregiver Burnout (Episode 507)

For quick facts on end-of-life planning, go to Second Opinion, End of Life (Episode 313)  

  • The National Kidney Foundation (NKF) estimates that:
    • 20 million Americans – one in nine adults - have chronic kidney disease (CKD).
    • More than 400,000 Americans have end-stage renal disease and require dialysis or a kidney transplant to stay alive.
    • Over 50,000 patients are waiting for transplants but only about 14,000 will receive them due to a shortage of suitable donors.
  • Kidney disease is increasing at an alarming rate in the United States due to increasing incidence of diabetes mellitus, hypertension (high blood pressure), obesity, and an aging population.  The National Institutes of Health (NIH) reports:
    • The number of people on kidney dialysis or who have had a kidney transplant due to failure has doubled each decade for the past two decades.
    • The number of people with end-stage renal disease will surpass 660,000 by 2010 and reach 2.24 million by 2030.
  • Many diseases can damage the kidneys.
  • People with diabetes, hypertension or a family history of kidney disease are at high risk for kidney disease.
  • African Americans, American Indians, and Hispanics/Latinos develop diabetes, CKD, and kidney failure at rates higher than Caucasians. Scientists have not been able to explain these higher rates.
  • Kidneys are very adaptable. Even when most of a kidney is not working the remaining portion will increase its activity to compensate for the loss. It is possible to lead a healthy life with just one kidney instead of the normal two.  
  • Symptoms of chronic kidney disease usually develop slowly.  Many people with impaired kidney function are not diagnosed until after their kidneys fail.
  • There is no cure for chronic kidney disease. The four goals of therapy are to:
    • Slow the progression of disease
    • Treat underlying causes and contributing factors
    • Treat complications of disease
    • Replace lost kidney function  
  • Ultimately, chronic kidney disease progresses to kidney failure in most people. The rate of decline in kidney function depends somewhat on the underlying disorder causing the kidney failure and on how well it is controlled.
  • Kidney failure is when your kidneys stop working well enough for you to live without dialysis or a kidney transplant.  There are two kinds of kidney failure:
    • Acute renal failure
    • End-stage renal disease (ESRD)
  • Strategies for slowing progression and treating conditions underlying chronic kidney disease include the following:
    • Control of blood glucose
    • Control of high blood pressure
    • Diet
    • Smoking cessation
  • Survival when kidney failure is severe (end-stage kidney failure) is usually limited to several months in people who are not treated, but those who are treated with dialysis or who receive a kidney transplant can live much longer.
  • Your kidneys are not solitary organs. When your kidneys are harmed or begin to malfunction, other organs are severely affected.
  • People with chronic kidney disease are at a much higher risk than the general population to develop strokes and heart attacks. 
 

Ask Your Doctor

For questions to ask your doctor on caregiving, go to Second Opinion, Caregiver Burnout (Episode 507)

For questions to ask your doctor on end-of-life planning, go to Second Opinion, End of Life (Episode 313)  

If you believe you might be as risk for kidney disease:

  • What is my risk for developing kidney disease?
  • What can I do to reduce my risk?
  • Should I be tested even though I have no symptoms at present?  If so:
    • What tests will be done and what do they measure?
    • How often should I repeat these tests in the future?  

If you've been diagnosed with kidney disease:

  • Can you describe my condition in simple language?
  • What caused my condition?
  • What stage have I reached?
  • What symptoms can I expect?
  • What is my prognosis?
  • (If you are a woman of childbearing age) Will I be able to have a baby?
  • How can I distinguish between kidney disease symptoms and those caused by other conditions?
  • What lifestyle changes must I make?
  • What options do I have for treatment?
  • When will I need to start treatment?
  • Are there any risks to this treatment?
  • What is success or failure rate of this treatment?
  • Are there any side effects to this treatment?
  • What happens if I choose to have no treatment?
  • How much is this treatment going to cost?
  • Are there programs that provide financial assistance?
  • What other kinds of assistance will I need and how can I get it?
  • Should I see a nephrologist?

If you need and choose to have dialysis:

  • How will I receive dialysis treatment?
  • How much time will dialysis take?
  • What will I feel like on dialysis?
  • What should I expect that might not feel normal?
  • Will I be able to continue to work?
  • Will I be able to participate in sports while on dialysis?
  • Can I travel while on dialysis?
  • Can I choose to stop dialysis after starting it?
  • Is there a dialysis social worker I can talk to?

If you're considering transplantation:

  • Do I qualify for a kidney transplant?
  • What are all the possible outcomes of a transplant and how likely is each to occur?
  • What are typical survival rates if the transplant is a success?
  • What is the process of getting a kidney?
  • What is the average wait for a kidney to become available?
  • What should I consider when choosing a transplant center?
  • How do I register for a transplant?
  • What can I do to prepare for the kidney transplant?
  • What happens during the transplant?
  • What can I expect after the transplant? 

If you're considering organ donation:

  • How do I register to become an organ donor after my death?
  • What is the process to determine if I can be a live kidney donor?
  • What should I expect about the surgery and recovery period?
  • What are the likely long-term effects?
  • Will I have trouble keeping or getting insurance after the donation?
  • Who pays the medical costs?  Are there any expenses not covered?
  • What are the odds my donated kidney won't be rejected?
  • (For women of child bearing age) will I be able to have children after donating a kidney?

Key Point 1

In management of a chronic disease, the burden on the caregiver is great, and there are physical and emotional costs to the caregiver.  The patient is not the only one who needs to be watched and taken care of. 

A diagnosis of kidney disease brings with it potentially life-altering consequences – both for the individual who is ill and those who care for him or her.   

People in the latter stages of kidney disease need a great deal of support to manage their illness as well as to take on the tasks of daily living they can no longer perform.  Unfortunately, our health care system hasn't adjusted to serve the needs of the growing number of the chronically ill in America.  Our health care model is primarily geared towards treating people with acute episodes – not people with long-term health needs and recurring problems. Family and friends are called on to fill the gap. More often than not, these caregivers are untrained and under-supported.  They've been described as a "shadow workforce," taking on the roles of case managers, medical record keepers, paramedics and patient advocates.

It's a challenging scenario.  On one hand, caregiving can be uniquely satisfying.  Feelings of unconditional love and profound bonding can be a part of the experience.  There can be personal growth through setting new priorities, discovering strengths you didn't know you possessed, and getting better at accepting life as it unfolds.  Conversely, the journey can be fraught with frustration, self doubt, loneliness and grief.  Bottom line, it takes a great deal of personal determination to be a caregiver. 

No one comes to the experience of dealing with chronic illness prepared for what lies ahead.  Caregivers often find themselves scrambling to cope with a long litany of tasks – dealing with doctors and insurance companies, finding appropriate and affordable resources, and simply attending to normal, everyday tasks.  The caregiver's learning curve is steep.  They have to absorb in-depth information about their loved one's disease so they can help evaluate different treatment alternatives, make sure doctor's orders are properly followed, and recognize complications if they occur.  They often need to learn actual healthcare skills – keeping wounds clean, giving medications, and monitoring blood pressure and blood sugar levels.  It's common for them to feel constant conflict between job responsibilities and giving care.  Some caregivers are forced to take a leave from work or retire early, adding to their stress with increased financial concerns.    

The energies of the caregiver can become totally absorbed by their loved one's illness.  Many caregivers try to provide care single-handedly and end up neglecting their own needs. It's not uncommon for them to think that their life has to come second to the needs of their loved one.  Yet, in additional to an overwhelming volume of things to be done, they also have to come to terms with the sacrifices they're making –  the loss of the fullness of their personal relationship with the ill person plus the life choices they are no longer free to make – and their own emotions.  Family members feel the same shock, fear, anger, sadness and loss as the person who is ill.  They are the witnesses to their loved ones' physical and emotional deterioration.  

Chronic stress without relief can lead to both physical and emotional problems.  Research shows that caregivers:

  • Are more likely to be have symptoms of depression or anxiety
  • Are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
  • Have higher levels of stress hormones
  • Spend more days sick with an infectious disease
  • Have a weaker immune response to the influenza (flu) vaccine
  • Have slower wound healing
  • Have higher levels of obesity
  • May be at higher risk for mental decline, including problems with memory and ability to concentrate

A study of caregivers published in a 1999 issue of the Journal of the American Medical Association reported that elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

The irony is that the well-being of the patient depends on the well-being of the caregiver.   By neglecting themselves, caregivers put their loved one in danger of losing their most important support person.  To evaluate your level of caregiving stress, take a simple test from the PBS Caregiver's Handbook (part of the web site for the 90-minute program Caring for Your Parents)Go to Caregiver Self-Assessment Questionnaire (PDF).

If you find you have a number of symptoms associated with high levels of physical and emotional stress, contact your primary care doctor for an appointment, take the questionnaire with you, and discuss next steps, such as finding a therapist or support group, or taking medication. 

For more information on the challenges of caregiving and how to cope with them, go to Second Opinion, Caregiver Burnout (Episode 507) or Second Opinion, Alzheimer's Disease (Episode 505)

Key Point 2

When dealing with end-stage chronic disease, the decisions for and against interventions can be agonizing to make and to live with.  It is important that open communication results in all options getting weighed.

Treatment for kidney disease is a choice.  Many people feel they have to start or continue any treatment offered to them.  That's not true. While your health care team can provide guidance, you are the one in control.         

It's not easy to make decisions, especially if you have not had a lot of time to adjust to having kidney failure.  Strong emotions can cloud your judgment.  You can swing between optimism and hopelessness.  Your family can help, but both you and they will need professional support to explore all medical, ethical, psychosocial, and spiritual issues.  Talking to others who have kidney failure is especially helpful.  Your decision should be an informed one.  You need to be aware of all your options, the possible outcomes and the long-term prognosis based on your treatment path (or decision).     

The treatment options with end-stage kidney disease include:

  • No treatment
  • Dialysis
  • Transplantation

All these choices involve risks and lifestyle restrictions.

The No-Treatment Option
People may choose not to have dialysis or a transplant for a number of reasons. 

  • If they have other serious illnesses they may not want to extend their life.  
  • Dialysis can be physically challenging and emotionally painful.  They may decide that no dialysis will provide a better quality of life than dialysis. 
  • For some people the thought of ongoing treatment with the many complications that occur during an extended course of kidney failure is simply too much.
  • Personal or religious beliefs may prevent them from considering dialysis or transplant.

People who choose not to have dialysis or a transplant can live for months or even years with conservative treatment, using diet and medication to manage kidney failure and its symptoms.  However, if an individual does not have any kidney function at all, then survival is likely to be no more than several days or weeks.  

Sometimes it is difficult to decide whether dialysis will benefit an individual. It is possible to start dialysis as a trial, usually for a few weeks.  It can then be discontinued if the individual does not feel an improvement in his or her health or quality of life.   

The decision not to get dialysis or pursue a transplant can be a very difficult to share with your loved ones.  A social worker or counselor can help. Also, you need to be sure you are making this choice for the right reasons. Your health care team can help you rule out any factors like depression or other issues that could be changed to improve your quality of life.    

Dialysis:
Dialysis helps to maintain your body's balance by:

  • Removing waste and extra fluid from the blood
  • Keeping the blood's chemical balance at a safe level
  • Assisting with blood pressure control  

While dialysis is a life-prolonging blessing, it can also be demanding and cause major changes in your life.  Most people find ways of dealing with it, particularly if they are otherwise in good health.  Sometimes co-existing conditions make dialysis more complicated and it may not improve your quality of life greatly.

There are two kinds of kidney dialysis: hemodialysis and peritoneal dialysis (PD).  Hemodialysis is the more common, and involves the patient's blood being passed through a dialysis machine, where it's "cleaned" and then sent back into the patient.  In peritoneal dialysis, a catheter is surgically placed in the abdomen.  The patient feeds a special dialysis fluid into in the peritoneal cavity through the catheter and waste products and extra fluid are pulled through the peritoneum into the dialysis fluid through osmosis.   

There are pluses and minuses to both methods of kidney dialysis.  

In most cases, your Nephrologist will provide information about the two types of dialysis when the GFR is less than 30.  If hemodialysis is chosen, it is important to prepare for dialysis ahead of time with surgical placement of an arterio-venous fistula (AVF).  This is also known as a "shunt".  It is the connection of an artery in the arm to a vein next to it.  Dialysis nurses place needles in the vein in order to access the blood that needs to be "cleaned".  These shunts usually take several months after surgery is done to heal and develop before they can be used for dialysis.  If dialysis needs to be performed right away, it can be done through a dialysis catheter-similar to a large IV-- (intravenous line) placed in the neck.   Problems with catheters is that you cannot shower with them in place (they cannot get wet), they are prone to infection and they do not provide quite as efficient a dialysis as a shunt.  Studies have shown that mortality is higher in patients who have catheters for dialysis compared to those with AVF's.  It is recommended that patients have these shunts placed at least 6 months prior to the anticipated need for dialysis.  Some recommend that this be done when the GFR is < 20. 

For peritoneal dialysis, a peritoneal dialysis catheter can generally be placed 2 – 3 weeks prior to starting PD. 

Transplantation
Transplanted organs offer a better quality of life for many, but the demand for kidneys far outweighs the supply.

When considering transplantation, you need to be willing to accept all possible outcomes:

  • You may die during surgery, from a secondary infection caused by the immune system being over-compromised, or from toxic levels of anti-rejection medicines.
  • You may get a disease or virus from the donor
  • The transplanted organ may not work
  • Your body may reject the transplanted organ
  • Your original kidney disease may recur  
  • Your transplanted organ may function for your lifetime  

End-Of-Life Planning
No matter what treatment option you choose, you should make sure your family and health care team know your wishes for the end of your life as early in the process as possible.  With advanced CKD, cognitive function may decline to the point that comprehension and decision-making capacity are impaired. 

  • Make sure you have a Will.
  • Consider having a Medical Power of Attorney and an Advanced Directive.
  • Make a list of your financial records including bank accounts, real estate, and insurance policies.
  • Provide contact details of people who can help to settle your estate. 
  • Let people know about your choice of funeral services.

For more information on end-of-life planning, go to Second Opinion, End of Life (Episode 313)

For more information on the challenges of caregiving and how to cope with them, go to Second Opinion, Caregiver Burnout (Episode 507) or Second Opinion, Alzheimer's Disease (Episode 505)

Medline Plus

Medline Description: 

Conduct an off-site search for Kidney Disease information from MedlinePlus.  These up-to-date search results are based on search terms specific to Second Opinion Key Points.

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