Your kidneys are vital organs that keep your blood clean and free of waste. When something goes wrong with your kidneys, you can develop serious health problems, which is why it is important to take steps to stop kidney disease before it develops.

In this Q&A, Dinushika Mohottige, MD, Assistant Professor of Medicine (Nephrology) at the Icahn School of Medicine at Mount Sinai and at the Institute for Health Equity Research, explains the many symptoms of kidney disease and how you can prevent it.

What causes kidney disease?

The key causes of kidney disease in the United States are diabetes and high blood pressure (hypertension). It’s important to recognize that these factors are the most common causes of kidney disease, because we can treat these conditions, and slow, or halt the progression of disease.

How can I prevent kidney disease?

Here are some of the most important things that you can do to prevent kidney disease:

  • Speak with a primary care physician or whomever you see for your primary care needs about whether you have any of these common risk factors, and then address them, either through medications or changes in the way that you are living your life. Think about things like diet, and the role of certain types of foods that might influence both diabetes and hypertension.
  • Make sure that if you have kidney disease, you are aware of medications and their kidney-related risks. This includes medications purchased over the counter, such as high doses of non-steroidal anti-inflammatory drugs.
  • Think about your physical activity. This doesn’t have to mean going to a gym. Even fairly vigorous walking can be incredibly important. Think about opportunities to make sure you’re eating foods you like, but that are not necessarily going to accelerate the risk of kidney disease. The National Kidney Foundation and other patient organizations have a lot of resources on how one might do this.
  • Recognize whether you have a family history of kidney disease. Have other people in your life been affected by kidney disease? Have they been on dialysis or gotten a transplant? These are some important things that you might want to know before having a conversation with your provider or health care team about your own risk for kidney disease.

When should someone see a doctor?

One of the toughest things about handling or managing kidney disease is that kidney disease often presents silently. Although there are about 37 million people in the United States who are living with chronic kidney disease, less than 10 percent, in many studies, have been found to know that they actually have kidney disease. That is because the symptoms of kidney failure are often silent until a person has already lost a substantial amount of their kidney function, and this is important. One of the things that you can do is have a conversation with your physician or health care provider regarding what your kidney function is. That can be measured in blood tests, including the serum creatinine, and that can be assessed also by looking at your urine to see whether you are having an abnormal amount of protein spilling from your urine or whether you have red blood cells, which shouldn’t be coming through your urine. If you are also noticing changes in urination—more difficulty emptying your bladder, swelling, and other changes—these are all important alerts to see a health care provider immediately.

What resources are available?

The National Kidney Foundation is an amazing resource. There are several other resources for people living with kidney disease that offer everything from educational materials about what kidney disease is and how it might influence your life, to the types of foods to cook that are more kidney-friendly, to resources and support as you transition into perhaps needing dialysis or thinking about a transplant.

What are some symptoms of kidney disease?

There are a few symptoms in the context of kidney disease, such as being more fatigued or having less energy, and having a harder time concentrating or doing the things you typically do. This can also include difficulty sleeping. This can include changes in your urination—urinating less, urinating more often, seeing blood in your urine, which are all concerning, as is noticing foamy or “sudsy” urine and developing swelling. Other symptoms a person who has pretty advanced kidney disease might begin to experience include but are not limited to:

  • swelling around the feet and the ankles; new shortness of breath
  • cramping in your muscles, fatigue, or having less energy
  • a poor appetite overall or feeling less inclined to eat; food tastes differently, such as metallic tasting
  • swelling in other parts of the body, including around the eyes
  • changes in your skin, such as drier or itchy skin

Each of these might represent some symptoms that your kidneys are not working as well.

What are some of the latest advancements in kidney disease treatment and management?

Fortunately, due to the efforts of the kidney care community broadly, there have been multiple advancements in the treatment and management of kidney disease in the United States. There’s an important deliberation occurring now, which is regarding whether kidney function should be assessed as a preventative screening opportunity by the U.S. Preventive Service Task Force. Many kidney care organizations are advocating for this. This would mean a more universal opportunity to screen people for kidney disease detected earlier, and therefore, intervene earlier.

For those living with kidney failure, many organizations are advocating for more equitable care in terms of access to transplant and dialysis you can conduct at home.

There are also new medications being tested for specific types of kidney disease, including those with genetic underpinnings. Be sure to speak with your doctor about your options, including possibilities to enroll in clinical trials that may help you advance newer therapeutics that could help.

What therapeutics are available?

In the last several years, we have seen the opportunity to intervene and reduce the risk of kidney disease among individuals because of multiple classes of new therapeutics. One of the most important is called SGLT2 inhibitors. These medications can now be used in individuals with and without diabetes to slow the progression of kidney disease. Along with this, there are several new agents, including GLP-1 agonists, used to treat diabetes and other conditions, which have important effects in terms of reducing the risk of kidney disease progression and poor heart-related outcomes, which are often linked to having kidney disease. These are just two examples of the types of disease-modifying therapies that have given us opportunities to slow disease progression, particularly among people who have diabetes-related kidney disease, but also in individuals who do not.

How does kidney disease affect a patient’s overall health and well-being?

It is important to think about kidney disease as one of the many things in a person’s life that might impact how they feel, how well they’re doing, and what risks they have for other diseases and concerns, particularly those impacting the heart. Unfortunately, kidney disease increases your risk for heart disease, and also plays a key role in regulating your fluid balance, blood cell production, and bone health. One of the most moving things is hearing from the people that I’m fortunate to take care of about how their kidney disease has impacted them. There are many symptoms—from loss of sleep, fatigue, and appetite to swelling and fatigue—that are influenced by kidney disease. These get in the way of people working, enjoying their hobbies, and truly feeling like they have the best quality of life. Therefore, we have to collectively pour energy into treatments that help us detect, prevent, and slow kidney disease. We also need to make sure the best treatments are made available to all who need them, regardless of ability to pay and other factors.  It is critical to recognize that on a day-to-day basis, kidneys are doing a lot of work for our bodies—they keep many other organ systems in balance.

What happens when the kidneys reach an advanced stage of kidney failure?

When individuals reach the stage where there is kidney failure and they require some replacement of their kidney function that is not in the form of a transplant—for example, dialysis—many people describe a lot of challenging symptoms. Even though dialysis is a life-saving therapy that replaces kidney function, it often comes with the burden of having to undergo this treatment several hours per day, several times a week, three times a week. Although there are opportunities to do this therapy at home, it still comes for many patients with additional symptoms—feeling fatigued after the treatment, having less time to spend with family, and in some instances, it can influence your mental health, as well, leading to depression or anxiety. Some also describe this having a significant impact on their sense of freedom, being able to work, and feeling fatigued.

What should I do if I experience these symptoms?

There are many types of symptoms, both physical and mental, that can arise due to kidney disease. As such, it is important to feel empowered to speak with your health care team early and often about whether you have kidney disease. You might say—“How are my kidneys?” or “I just want to make sure I have all the information I need to protect my kidneys.” You can also engage with excellent resources, including those through the National Kidney Foundation. If you are told you have kidney disease, you should advocate and speak with peers and support organizations to ensure that you get answers about causes of the disease, additional tests, and the best strategies to intervene and slow disease progression.

What advice do you have for those living with or at risk for kidney disease?

The most important advice that I have for people at risk for kidney disease—people who have high blood pressure or diabetes—is to start to have a conversation with your health care team and health care providers about what things you can do to manage that risk or control those conditions on your own. Ask them for help, ask them about how your kidneys (and other conditions) are doing, and lean on them as a team to identify the medications and other supports that can help slow the disease or reduce your risk of developing kidney disease. Identify resources in the community that can talk to you about social support and other things that you might want to know about kidney disease.

What do you want people who are already living with kidney disease to know?

One of the most important things is to feel empowered to remember that you know your body better than anybody else. If something does not feel right, or you are concerned about a rapid change in your kidney function, engage with your health care team and ask for answers about what is going on. People living with kidney disease should also remember there are multiple options for treating kidney failure. Particularly once you get to the stage of having kidney failure or requiring kidney replacement therapy, there are multiple options that your providers and your health care team should be speaking to you about. Dialysis is not the only solution. Transplants, including living kidney donation (the best treatment for kidney failure), should be options you discuss with your team. Some individuals might want to hear about conservative options for care, as well as options for doing dialysis at home.

When is it necessary to get a transplant?

Getting a transplant is a long process that requires many, many steps, as well as certain criteria to be eligible. Asking about transplantation early and often from your health care team is important. Having a person with you at your visits to take in some of the information about what your options are, what treatments are like, and to be there to support and help you is also important for managing what can be a complex and challenging process. We—your clinicians and members of your care team—are here for you to partner with you in making those decisions. Our job is to get to know you and your goals and values, so we can make sure we discuss options and develop plans with you that align with your goals and values.

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