Sometimes called renal failure or chronic kidney disease, kidney disease is a term for when kidney function becomes damaged. Because the kidneys filter all your blood every 30 minutes, kidney disease and renal failure are serious conditions that can have all sorts of effects on someone’s lifestyle, and can even be life-threatening. Kidney failure is not inevitable, though. By getting tested early, sticking to treatments, and making lifestyle changes, a senior with kidney disease can live a long and healthy life. But it's critical you get the right care to properly manage the disease.
If you have a loved one with kidney disease, read on to learn more about the care options you should consider, ways to pay for care, financial considerations, organizations to explore, and answers to common questions.
Kidney disease progression
The kidneys act as the cleaning house for the blood. They remove waste, excess fluid and toxins. They also stimulate the production of red blood cells, keep the bones healthy, regulate chemicals in the blood and even help control blood pressure.
When the kidneys are damaged and do not filter as well as they should, the body ends up with excess fluid and waste in the system. This causes a cascade effect that can lead to a multitude of problems in the body.
Kidney disease can cause stroke, heart disease, anemia, more infections, loss of appetite and depression. Since the blood isn’t being filtered the way it should be, the blood may have low levels of calcium and high phosphorus and potassium levels. Kidney disease is typically progressive, meaning it will get worse over time. Treatments are aimed at slowing that progression. Untreated kidney disease leads to kidney failure, heart disease, and cardiovascular disease.
What’s more is that kidney disease is caused by primary conditions that damage the kidneys:
- High blood pressure
- Polycystic kidney disease
- Inflammation of the kidneys’ filtering units, called glomerulonephritis
- Inflammation of the kidneys’ tubes and surrounding parts, called interstitial nephritis
- Urine backing up into the kidneys called vesicoureteral reflux
- Obstruction of the urinary tract over years, like kidney stones, cancers or enlarged prostate
Further, kidney disease goes in stages. They are:
- Stage 1 and 2: This is also known as mild kidney disease. Kidneys are operating with a 60 percent renal function or more. Some signs of damage are apparent.
- Stage 3: This is known as moderate kidney disease. Kidneys are functioning at 59 to 30 percent.
- Stage 4: This stage is in a significant category. It means kidneys are operating at 29 to 15 percent renal function. Symptoms become noticeable, and it’s time to start learning about treatments for kidney disease like dialysis or transplant.
- Stage 5: Kidneys are at 14 percent or less in function. Dialysis or a transplant will be required.
Symptoms of kidney disease include:
- Loss of appetite
- Fatigue and weakness
- Sleep issues
- Less mental sharpness
- Shortness of breath (fluid can build up in the lungs)
- Chest pain (fluid can build up around the heart)
- High blood pressure
- Swelling in the feet and ankles
- Changes in urination
- Muscle cramps and twitching
The tricky part about kidney disease is that the kidneys are great at adapting when they lose partial function. That may mean symptoms appear after the irreversible damage is present. It’s important to visit a doctor right when symptoms become present and get screened for kidney disease if it runs in your family.
Effects on patients and family
Because it's a disease that affects the whole body, there are many different lifestyle complications that can occur with kidney disease. Someone with kidney disease may face fluid retention, which can cause the arms and legs to swell. Fluid in the lungs can cause problems breathing.
A rise in potassium levels could hurt the heart and be life-threatening. Heart disease and cardiovascular disease becomes more of a risk factor overall. Your loved one could have anemia since the kidneys have a role in producing red blood cells. Bones can weaken and bone fractures can become more common.
Sex drive can become affected. Immune responses could be suppressed, leading to increased infections. Kidney disease can increase pregnancy complications. The central nervous system can become damaged, which can change someone’s personality, affect their ability to concentrate and cause seizures. In the end stage of kidney disease, your loved one may need dialysis treatment or a kidney transplant to survive.
The most common form of treatment for end-stage kidney disease is dialysis, and many people immediately think of this treatment in conjunction with kidney disease. But it's only used when all lifestyle and medication options have been exhausted.
There are two types of dialysis: peritoneal dialysis and hemodialysis. In hemodialysis, a machine outside the body removes waste and fluid from the blood. With peritoneal dialysis, the blood gets cleansed from inside the body.
These treatments can be fairly intensive. Hemodialysis is done three times a week and lasts about four hours per treatment. Peritoneal dialysis is actually done two ways: Continuous Ambulatory Peritoneal Dialysis (CAPD) requires replacing a bag several times a day, while Automated Peritoneal Dialysis (APD) runs overnight while you sleep. However, dialysis is for end-stage kidney failure and most people will not need kidney dialysis. Having a healthy diet and other healthy habits can protect the kidneys, especially if this chronic disease is caught soon enough.
Organizations and informational resources
Because kidney disease can have such a large impact on lifestyle, you and your loved one with kidney disease will likely need support during this trying time. Below are some top organizations that offer resources for people who have kidney disease and their loved ones.
American Association of Kidney Patients: This group’s mission is to help with education, advocacy, and patient engagement. It also fosters patient communities. The site is chock-full of educational resources and even lists events to attend.
American Kidney Fund: This group provides education, advocacy and financial assistance to those with kidney disease. It also has information on transplants.
Healthfinder.gov: This government disease educational resource is a great stop for learning all about the disease. Just search for kidney disease, and you can learn about other diseases and tips for healthy living.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): This governmental resource provides education, research, and funding for the disease.
National Kidney Foundation: This is another group that focuses on advocacy and education for those living with kidney disease. There are also events, as well as information on organ donation and transplant.
National Kidney Registry: If your loved one is looking at a kidney transplant, this resource helps connect donors and those who need a kidney.
Organdonor.gov: This is the government website for organ donation.
Polycystic Kidney Disease Foundation: This site is devoted to one of the common underlying causes of kidney disease. The group helps with finding treatments and a cure for the condition. It also has educational resources and tips for living with the disorder.
U.S. National Library of Medicine: If you’d like to read about kidney disease, including the latest studies, this is your resource.
Financial and legal considerations
Since kidney disease can progress, there may come a time when you and your loved one will need greater assistance, both financially and legally.
Medicare, the federal insurance program, is typically a service for those over 65 years of age. However, certain disabilities are severe enough where assistance can be open to any age, as long as certain kidney disease requirements related to how long someone or their spouse or guardian have worked are met. End-stage renal disease (ESRD) falls into that category. You can contact the Social Security office to learn more.
You also may be able to source financial assistance from non-profit groups dedicated to kidney disease. For instance, the National Kidney Foundation has a free prescription discount card. Every time someone uses the card, the foundation gets a donation.
The American Kidney Fund can offer financial assistance to patients who have demonstrated trouble paying for their health insurance premiums. It also offers grants for services not covered by long-term care insurance, like transportation costs to and from dialysis.
Other grants may also be available to transplant patients who demonstrate need, like the American Transplant Foundation patient assistance program.
Since kidney disease can become progressively worse and comes with a host of complications, it may be time to help your loved one write out a will. A Final Will and Testament outlines how assets are to be handled after the loved one’s passing. A living will tells doctors and family how health care is to be handled in case of incapacitation, where the person cannot make the decision for themselves.
Power of attorney
Wills cannot anticipate everything that pops up, so assigning a power of attorney names a person or persons to handle affairs in the case that a loved one cannot do it themselves. The durable power of attorney for finances sets up a person or persons to handle assets, and the durable power of attorney for healthcare allows a person/persons to make healthcare decisions on behalf of the loved one.
Another way to distribute assets is to set up a trust. These allow a third party to distribute assets. Many different types of trusts are available, based on different types of assets. For instance, there are real estate trusts, living trusts, asset protection trusts and funeral/final expense trusts. Trusts are set up with a lawyer or financial advisor.
Long-term care options
Given some of the major lifestyle changes with advanced kidney disease, you may need to set up long-term care for your loved one. End-stage kidney disease can result in a high rate of comorbidity (or having multiple diseases) and significant impact on functioning. Nursing home placement may seem unavoidable.
However, along with nursing homes, your options run the gamut these days for long-term care facilities: Independent living, assisted living, continuing care retirement communities, home health care, adult day care, respite care.
When assessing long-term care, you’ll want to tour the facility, both during touring hours and during evenings and weekends, if you can. Prepare a list of questions going in. You may include:
- What is your experience caring for someone with kidney disease, more specifically the stage my loved one is at?
- If your loved one needs hemodialysis: Do you have transportation available to and from dialysis?
- If your loved one needs peritoneal dialysis: Are you experienced in assisting with and administering these treatments? Whom do you have on staff to assist with these and what are their staffing schedules?
- What are your lifestyle activities like for keeping my loved one healthy?
- What is your plan in case of an emergency?
You may also want to carry this checklist from the AARP if comparing nursing homes/long-term care facilities.
A kidney disease diagnosis is discouraging, but caring for your loved one will help prevent further kidney damage. Because kidney disease is caused by underlying diseases, preventing further damage will require treating the underlying cause. For instance, managing glucose levels if the kidney disease is caused by diabetes. You’ll need to work closely with your loved one and doctor to make sure you’re keeping the primary disorder under control or treated.
However, kidney disease is also a progressive disease, so there may come a time when dialysis is needed. Your loved one may need help getting to and from appointments if the dialysis is done outside the home. If dialysis is done at home, you may need to help your loved one manage the treatments, which may need to be completed several times per day.
Since central nervous system damage can cause changes to personality or trouble concentrating, your loved one with kidney disease may need a psychiatrist to help manage these symptoms. Stress and depression can also result from the difficulty of living with a progressive and life-threatening disease, so a counselor or support group may be in order.
In worst cases, your loved one may need a kidney transplant. Risk factors can be too high because it takes your loved one time to recover from, so extra care will be needed at this time. Recovery can mean days to a week in the hospital, with frequent checkups during the recovery period for a few weeks. The procedure also requires many medications to prevent organ rejection and other complications.
Managing chronic kidney disease can be a whole lifestyle overhaul, in addition to managing the primary condition that caused the kidney disease. The most important point is to control blood pressure since high blood pressure can put a strain on kidneys and damage them. The doctor may prescribe meds to help keep blood pressure or other primary conditions in check. You may need to help your loved one manage and remember to take them all.
Outside of that, keeping a healthy lifestyle, in general, will help with overall health, putting less strain on the kidneys as a result. NIDDK recommends not smoking, achieving a healthy weight, working with a dietitian to help develop meal plans, keeping physically active and getting enough sleep. You may need to work with your loved one to encourage these lifestyle habits.
Your medical team
When treating kidney disease you’ll have a lot of people working on your side. The care team will include:
- Primary care doctor: This is the first person in line you’ll see when your loved one notices strange symptoms. The primary care doctor will run the tests to see if your loved one has kidney disease.
- Nephrologist: These are doctors that specialize in treating kidney disease. Because kidney disease can be tricky and progressive, your loved one may end up seeing one these doctors. They oversee dialysis treatments. They also may oversee transplants. They are brought in when the kidney disease is complicated, quickly progressing or at an advanced stage.
- Support: Your loved one will also have a team of support professionals, like nurse practitioners, physician assistants and possibly a nephrology nurse collaborating with doctors in your loved one’s care.
- Renal nutritionist: These are dietitian professionals who know what foods are right for people with kidney disease. They’ll help with meal planning. They will also be able to meet a patient’s specific dietary needs.
Your primary care doctor will refer your loved one to a nephrologist if one is needed. If your loved one needs a primary care doctor, look around and make sure they are certified and licensed by the right boards. See how well they answer questions, how thorough they are in their testing and physical exams and how well they explain conditions and treatments.
Kidney disease FAQs
1. I see the term GFR a lot. What does that mean?
GFR stands for Glomerular Filtration Rate, and it’s the rate at which your kidneys are filtering waste and excess fluid out of the blood. It’s the main measure to see how well your kidneys are working. You and your loved one will need to work with a doctor to keep this number about the same. Wild fluctuations mean a problem.
Along the same lines, the urine albumin level is another important measure. It measures how much protein is in your blood. Albumin comes from the liver and will pass through a damaged kidney into the urine. The goal is to keep this level the same or lower.
2. What role does exercise play in kidney disease?
Exercise can actually help control some of the underlying diseases and symptoms that cause kidney disease. It can lower blood pressure and glucose levels. Being overweight can make the kidneys work harder and damage them faster, while stress can affect blood pressure and glucose levels. Exercise can reduce weight, and help manage stress. You and your loved one should talk to the doctor about what activities might be right.
3. My loved one with kidney disease seems depressed since getting the diagnosis. What can we do?
Depression is common for people who are suffering from long-term, chronic and progressive disease. Take your loved one to a counselor to get treated for depression. Support groups can also help loved ones know that they are not alone, gain a community of support and have a social outlet.
4. Are there ways to prevent kidney disease?
If kidney disease runs in your family, get tested for it regularly. Blood and urine tests are the common way to test for it. If you have diabetes, it’s important to get a test, as it’s strongly linked with kidney disease. In addition to diabetes, kidney disease is highly linked to high blood pressure.
Both diabetes and high blood pressure are the most dangerous for kidney disease because they damage the blood vessels in the kidneys, and then the kidneys cannot filter the blood as well as they should. The more the blood vessels are damaged throughout the years, the worse the kidneys work, until kidney failure can happen. That’s why if you have these conditions, you should get tested for kidney disease.
5. I hear you should eat a certain way to reduce kidney damage, but what specific changes can we make?
Working with a registered dietitian can help your loved one eat in a way that is right for their specific needs. However, there are certain guidelines to follow that will put less stress on the kidneys. Ways to eat healthy in order to prevent kidney failure include:
- Reduce sodium — Sodium raises blood pressure, and a higher blood pressure puts more stress on kidneys. To reduce sodium, eat more fresh fruits and veggies. Cooking from scratch also means less added sodium in the diet. Replace salt with spices and sodium-free seasonings. Look for low-sodium options at the store.
- Low-protein diet — When you eat more protein than you need, it’s up to the kidneys to filter out the waste produced, putting more stress on them. Talk to a dietitian about a low-protein diet and how much protein your loved one needs in a day, as the amount is different for different people.
- Go heart healthy — Fat can actually build up in the kidneys, still putting more stress on them. Avoid deep fried foods, use a non-stick cooking spray instead of oils or butter, remove fat from meat and look at food labels to avoid trans and saturated fats.
6. Why is it so important that people get tested for kidney disease?
Testing might be the only way that you’ll know you have it, according to the NIDDK. Early kidney disease has no symptoms. You can be going about your life, suddenly feel ill, and then it turns out your kidneys have nearly stopped functioning. The sooner you know you have it, the sooner you can begin treatment to delay further damage and possibly prevent kidney failure.
7. What is the prognosis for kidney disease?
That depends on how fast the disease is caught. It is a progressive disease, meaning it will get worse, but to what degree depends on how fast it is caught and how well it is treated. Kidney failure will either mean a kidney transplant or a lifetime of dialysis treatments. Patients could live for decades with dialysis treatments.
8. We’re looking at a kidney transplant. What can we expect?
As our guide to long-term care for kidney disease covered above in our resource section, there are a number of organizations that can help with securing an organ and financial assistance for a kidney transplant.
You have two options for finding a kidney: from a living donor family member or from a deceased donor. Many people will need to go on a national waiting list for when someone who is an organ donor has died and has a compatible organ. People can be on a waitlist for years.
Talking to a doctor is the first step. Some people are candidates for an organ transplant, some are not. Some people are not healthy enough for surgery or have a condition that would make the procedure’s risk factors too high.
After that, it can take weeks or months of meeting with a transplant center to take blood work, assess whether your loved one is healthy enough for surgery and whether they can take care of a transplanted organ. After the surgery, there is a strict regimen of meds and lifestyle changes to prevent organ rejection and take care of the new kidney.
After surgery, your loved one may be in the hospital for days or longer to recover. Follow-up visits will continue after leaving the hospital. There will be a strict dose of immunosuppressants to prevent the body from rejecting the organ as a foreign body and antibiotics to prevent infections.
Sometimes the body can still reject the organ, despite doing everything right. Seven percent of people who have a transplant have the organ fail within a year, and 17 percent lose transplants within three years.
Organ rejection can happen from the first few minutes after the transplant to three months after the procedure. Sometimes chronic rejection can happen over years. Talk to the care team about possible symptoms of rejection. Rejected organs could still mean dialysis treatments until another kidney is found.
9. What are our chances of getting a kidney?
As of January of 2016, there were 100,791 people awaiting kidney transplants. The median wait time is 3.6 years. In 2014, 17,107 kidney transplants took place in the U.S. By contrast, 4,761 people died waiting for a kidney transplant and 3,668 people became too sick for surgery. Your chances of receiving a kidney are good and as rapid medical advancements refine treatment options, the prognosis of life with kidney disease will likely only improve in coming years.
10. What kind of quality of life are we looking at with kidney disease?
That can depend on what disorders are causing the condition and how advanced the kidney disease has become before treatment. However, a positive element to the disease is that there are treatments that can improve symptoms and/or slow kidney failure. For instance, if kidney disease is causing anemia due to a loss of healthy red blood cells, there are ways to stimulate the body to make new cells or add iron into the system.
Work with the doctor and care team to help your loved one maintain the highest quality of life possible. Even modern-day dialysis treatments may not be as invasive as they once were and some can be completed at home.
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
Leona J. Werezak RN, BSN, MN is a registered nurse and adjunct nursing professor. She has 24 years experience working in a variety of healthcare settings including such remote locations as the Arctic Circle. Her research in early stage dementia was published in the Canadian Journal of Nursing Research and re-published in their 40th anniversary issue which showcased exceptional research published since the journal began. Her work in dementia care has also been published in the Journal of Gerontological Nursing. She currently teaches surgical nursing care on a thoracic/vascular unit to baccalaureate nursing students. Her clinical work with nursing students involves extensive work with older adults who have multiple chronic health conditions.