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Frequently Asked Questions about Chronic Kidney Disease (CKD)

If you have recently received a negative test result or chronic kidney disease (CKD) diagnosis, you will have lots of questions!

It can be quite alarming to receive any kind of diagnosis, and kidney disease is no exception. Although millions of Americans are living with some form of CKD, many of them don’t even know it. The unknown can be scary, and most people understand very little about kidney health and disease.

In honor of National Kidney Month, nephrologists Joseph Lee, Ken Boren, and Richard Gibney share how they address some of the most common questions they receive from new CKD patients.

Should I be concerned about my CKD diagnosis?

“One poor test result is seldom a cause for concern, and it is not a guarantee that you will need dialysis or transplant. 1 in 3 adults over the age of 65 have kidney disease, and a large percentage of diabetics will also present with CKD at some point in time.

“Your doctor will likely preform three rounds of testing on your blood and urine over three-month intervals. They are looking for consistent results,” explains nephrologist Joseph Lee, MD. “There are different factors that can affect your day-to-day test… vitamins can skew your results, or you could even test positive for protein in your urine after a 3-mile run.”

“A CKD diagnosis means it’s time to start paying attention. Your doctor is mainly concerned with what happens to your renal function over time. A gradual, slight reduction in a senior patient is not typically an issue, but a sudden, consistent drop in a younger patient is certainly something to look into. It may be a sign of kidney disease or other underlying conditions that are impairing kidney function.

“If you are doing all the right things but your kidneys are not responding, that can be a problem. Your doctor will need to monitor and track your kidney performance to find out what is going on.”

Joseph Lee, M.D.

What are the different levels of Chronic Kidney Disease?

“CKD is a term that encompasses a range of kidney problems, broken down into 5 different levels of kidney function:

“CKD 1 includes patients who have normal kidney function but still have a propensity to develop disease. Conditions like diabetes and hypertension can affect the kidneys at some point in the future. CKD may not suggest an immediate problem, but it’s still important to talk to your doctor about healthy lifestyle choices and proactive monitoring to keep your kidney health in check.

“CKD 2 includes patients who are experiencing slightly reduced kidney function between (90-60 mls/min). Depending on your unique health factors, this may or may not be a concern. Elderly patients, for example, may simply see reduced function in the process of normal aging, and probably will not require treatment. If you do have underlying conditions or protein in the urine, then your doctor will want to follow up with additional tests.

“CKD 3 includes patients with reduced kidney function whose underlying diseases may be progressing or are not managed well. The diagnosis may also apply to new issues that need to be investigated. CKD 3 is further divided into subcategories 3A and 3B. CKD 3A is not typically an immediate concern, but 3B will require close attention.

“CKD 4 includes patients who are developing a concerning problem. You’re talking about the possibility of dialysis or kidney replacement therapy or palliative care. Many times, it’s a red flag of another underlying disease. Most CKD stage 4 deaths are not due to kidneys, but cardiovascular disease. In late stage CKD 4, you need to be talking about treatment options with your doctor (home dialysis, in-center dialysis, transplant, etc.) Although you might not need treatment yet, it’s time to start making decisions about what to do next.

“CKD 5 includes patients who are close to kidney failure and are likely going to need renal replacement therapy to supplement their kidney function. Kidney transplant is the treatment of choice, and dialysis is the fall back. CKD 5 patients should begin evaluation for transplant.”

Ken Boren, M.D.

Who can I talk to?

“It can be quite scary to hear that you have chronic kidney disease, but you are not alone! Aside from your doctor, I always encourage people to get connected with other people experiencing the same issues. Find people on the same level… Options of care for CKD 1 are going to be way different than CKD 5.

“Ask them about their experience. What has worked for them? What hasn’t worked? Learn from each other. Encourage each other. Your doctor is ultimately the authority on medical treatment, but community can be a huge help in managing your disease and your emotional health day-to-day.”

Richard Gibney, M.D.

What are my options of care?

“Figure out what you expect from your doctor versus what they can actually do. If your doctor just tells you to wait until you need dialysis, that’s totally unacceptable. In many places, the PCPs are told to not send CKD patients until they need dialysis, but you have options!”

Ken Boren, M.D.

If I see a patient of high blood pressure, GRF of 19, and little to no protein. I’m not going to say you need to get on dialysis. We need to talk about options of care. Look at your medications. If you keep your cardiovascular issues under control, there is huge hope to preserve function. You’re involved. You have options.”

Richard Gibney, M.D.

“Ask your doctor what medicines they are prescribing to you? What should they do? What are the side effects? Some medications are bad for the kidney and some are helpful… certainly ACEs and ARBs inhibitors and SGCT2 appear to be helpful. Research is being done, and it looks like it reduces mortality and progression. If you are taken off of them, it should be for a good reason. A lot of times patients are taken off of them in a hospital situation and never put back on. There is a lot of confusion among hospital-based doctors.”

Ken Boren, M.D.

Further reading

If you or someone you care about has been diagnosed with chronic kidney disease, there are many resources available to help equip and educate. You are not alone! The National Kidney Foundation is a great place to start.

If you are a healthcare provider who would like to learn more about CKD care, the National Kidney Foundation has wealth of resources available to you at the Professional Education Resource Center. We would also love to equip you in your empowered healthcare journey. Contact us to learn how we can help.

Empowered Kidney Care

The Empowered Kidney Care staff is made up of doctors, nurses, educators, and change-makers all dedicated to revolutionizing the kidney care experience in America.