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Top Ten Questions to Ask Your Nephrologist

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Top 10 Questions to Ask Your Nephrologist

  • What is the diagnosis and prognosis for my kidneys?
  • What are my treatment options?
  • What are the side effects of my medications and will they interact with other drugs?
  • Should I test my urine at home and weigh myself every morning?
  • How many milligrams (mg) of sodium should be consuming per day?
  • Besides sodium, are there other dietary or other lifestyle changes I should make?
  • What are the next steps if I relapse or do not respond to treatment?
  • Do I need a biopsy?
  • What symptoms should I look out for?
  • When should I call the doctor?

Talk to Your Doctor About Your Kidney Health

Often, symptoms of kidney disease are invisible or not obvious. It is important to know the symptoms to look out for and questions to ask your doctor so that simple tests can be done to determine if you are at risk or have kidney disease.

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Signs and Symptoms of Kidney Disease:

  • Unexplained tiredness
  • Weakness
  • Nausea
  • Loss of appetite
  • Difficulty concentrating
  • Trouble sleeping
  • Dry, itchy skin
  • Feeling cold when others are warm
  • Feeling faint or dizzy
  • Ammonia-like breath
  • Food tastes like metal
  • Foamy or bubbly urine
  • Frequent urge to urinate
  • Blood in the urine
  • Brown-colored urine
  • Pressure when you urinate
  • Puffiness around eyes
  • Swelling in the ankles and feet
  • Frequent muscle cramps
  • High blood pressure
  • High cholesterol
  • Shortness of breath after minimal effort

Consider asking these questions at your next doctor’s appointment:

  • Do I have protein in my urine?
  • Do I have blood in my urine?
  • Why does the swelling in my legs and feet never go away, even after rest or sleep at night?
  • I have a family history of kidney disease. Does this put me at greater risk?
  • We have tried several blood pressure medications and none of them have worked. Why?
  • Why do I feel so tired all the time? I have a hard time with normal daily activities.
  • I have a hard time concentrating, even on small tasks. Why do I have “brain fog”?
  • I have little to no appetite and get nauseated a lot. What has changed in my body to make
    me not interested in eating?

Patient Empowerment Flyer

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I AM MORE THAN MY HEALTH CONDITION

My Choices

I am empowered
because I use and enforce
my right to be a
decision-maker as it
relates to my health and
treatment options.

My Needs

I am empowered because
I have access to resources
and information that help me
identify my needs and figure
out how my care should
address my needs.

My Voice

My Values

I am empowered because I know health equity means having access to the medical care I deserve. Healthcare should NOT be a privilege for some. All people should receive the same access to care so that we can have healthier individuals and communities.

My Expertise

I am empowered because my
expertise in living with a rare
disease is valuable. I know my
journey is powerful
and has meaning.

Understanding Primary Nephrotic Syndrome

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NEPHROTIC WHAT..?”

Some symptoms of nephrotic syndrome include:

Proteinuria- Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands, and feet that become painful

Hypercholesterolemia – High level of cholesterol

Hypertension – High blood pressure

Hypoalbuminemia – Low levels of albumin in the blood

Someone who is experiencing these symptoms but has not had a kidney biopsy is diagnosed with nephrotic syndrome. To learn more about what is causing a patient’s nephrotic syndrome, doctors may choose to perform a kidney biopsy. After biopsy, a patient is usually diagnosed more specifically, based on what can be seen under the microscope.

The common diagnoses are:


Focal Segmental Glomerulosclerosis (FSGS):
Some sections of kidney filters show scarring.


Minimal Change Disease:
Kidney tissue shows very little change from normal kidney tissue.


Membranous Nephropathy:
Immune system attacks kidney tissues and damages filtering units.


Low-Sodium Cooking for Kidney Health Cookbook

NephCure is thrilled to be able to offer this Low Sodium Cookbook to help guide you as you navigate your rare, protein-spilling kidney disease. Paying attention to what you eat and drink is an important part of managing your disease and your symptoms.

The recipes featured in this cookbook follow a low-sodium diet of between 1,500 mg to 2,300 mg per day. They were created for patients who suffer from rare, protein-spilling kidney disease who are not on dialysis and may require a more stringent renal diet. The information and recipes in this cookbook should be used as a guide. Each patient is different, as are their nutritional needs. Always consult your kidney doctor or renal dietician to determine the best diet plan for you or your loved one’s current condition. We hope you enjoy these dishes!

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Kidney Biopsies

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Why Biopsy?

For Adults

Kidney doctors are more likely to recommend a biopsy for adult patients when they are first diagnosed.

The results of the biopsy will help determine what is causing a patient’s Nephrotic Syndrome and can help guide treatment.

For Children

Nephrologists will usually recommend a child have a biopsy if:

  • They have certain clinical findings when they are first diagnosed (such as a family history of Nephrotic Syndrome).
  • They do not respond to their very first course of prednisone (“steroid resistant”).
  • They initially responded to steroids, but have gradually become less responsive, have frequent relapses, or cannot be weaned off of steroids (“steroid dependent”).
  • They have unusual findings such as abnormal kidney function.

The Biopsy Procedure


Biopsies are typically performed by a nephrologist or interventional radiologist.


Biopsies are often done after light sedation or local anesthesia.


A small piece of tissue from one kidney is taken by a specialized needle for examination under a microscope by a kidney pathologist.


After a biopsy, limited activity or bed rest will be recommended for a period of time.

Understanding Your Kidney Biopsy

learn from an expert of kidney biopsies, Dr. Chris Larsen from Arkana Labs. Dr. Larsen talks about everything from biopsy to diagnosis– and why the person who reads your biopsy is so important.

How Kidneys Work

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Function of the Kidneys:

The kidneys maintain proper blood composition by regulating water, protein, and electrolyte levels. When waste material is detected in the blood, the kidneys filter it and pass it on to the bladder.

Fast Facts


The kidneys sit just below the rib cage toward the back of your body on the right and left side


Each kidney is roughly the size of your fist


In one day, your kidneys filter almost 115 liters of blood and produce up to 2 liters of waste in the form of urine


Males are twice as likely to have MCD as females.


If MCD does not recur for three years, there is a good chance that it will not return.

Nephrotic Syndrome…

occurs when glomeruli become damaged, allowing key proteins to leave the body

Protein Loss…

Upsets the balance of the blood chemistry and results in swelling, malnutrition, and proteinuria

Left untreated Nephrotic Syndrome can progressively and permanently damage the kidneys and lead to complete kidney failure

Kidney Disease FAQs

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Your kidneys are vital organs. They filter and clean your blood and remove waste by making urine. Your kidneys also do other crucial jobs, including:

  • Control chemicals and fluids in your body
  • Help control your blood pressure
  • Help keep your bones healthy
  • Help your body make red blood cells

Having kidney disease means your kidneys are damaged and cannot do their job as well as they should. Kidney disease does not happen overnight—it is the result of a gradual loss of kidney function. Specific lifestyle changes and other treatments can help prevent or slow damage to the kidneys.

Risks for developing kidney disease include:

  • Diabetes (type 1 or 2)
  • High blood pressure
  • Heart and blood vessel diseases (cardiovascular disease)
  • Smoking
  • Obesity
  • Being Black, African American, of African descent, American Indian or Alaskan Native, or Asian American or Pacific Islander
  • Family history of kidney disease
  • Abnormal kidney structure
  • Older age
  • Recreational drug use (such as cocaine, marijuana, and methamphetamine)
  • Damage to kidneys from certain medications such as chemotherapy drugs, certain over-the-counter pain relievers, non-steroidal anti-inflammatory medicine (such as ibuprofen) and overuse of prescription pain medication

Why are Black and Brown people more at risk for kidney disease?

Black Americans are almost four times as likely as White Americans to develop kidney failure. While Black Americans make up about 13% of the population, they account for 35% of people with kidney failure in the United States. Diabetes and high blood pressure are the leading causes of kidney failure among Black Americans. Genetic variants in people who are African American, Afro-Latino, Afro-Caribbean or of African ancestry lead to a higher risk of kidney disease and faster kidney damage. Many people of African ancestry with hard- to-control high blood pressure and kidney damage have a variant of the APOL1 gene that causes their kidney disease. A kidney doctor, called a nephrologist, can help choose the best treatment options for a Black American with kidney disease if they know the patient has the high-risk APOL1 genetic variant. A growing number of Americans with Hispanic or Latino heritage are diagnosed with kidney disease each year. Since 2000, the number of Hispanic or Latino people with kidney failure has increased by more than 70%. Compared to non-Hispanic/Latino people, they are almost 1.3 times more likely to be diagnosed with kidney failure, often caused by diabetes and high blood pressure.

What are the most common symptoms of kidney disease?

Some symptoms of kidney disease are non-specific, meaning other illnesses can cause them. Sometimes, signs and symptoms may not appear until irreversible damage has occurred. Symptoms include:

  • Fatigue
  • Weakness
  • Nausea
  • Difficulty concentrating
  • Trouble sleeping
  • Dry, itchy skin
  • Frequent urge to urinate
  • Blood in the urine
  • Feeling cold when others are warm
  • Feeling faint or dizzy
  • Ammonia-like breath
  • Foamy or bubbly urine
  • Puffiness around the eyes
  • Loss of appetite
  • Swelling in the ankles and feet
  • Muscle cramps
  • High blood pressure
  • High cholesterol
  • Shortness of breath after minimal effort
  • Food tastes like metal
  • Pressure when you urinate

How can I have kidney disease if I feel okay?

Early on, kidney disease may not cause any symptoms because the damage to your kidneys is still mild. Your kidneys compensate for this damage by working even harder. Lab tests, including urine and blood tests, are the only way to detect kidney disease at this early stage. Most people do not notice symptoms until the kidney damage is severe, so it is essential to check your kidney function annually and know your genetic risk for kidney disease.

Is kidney disease inherited or passed on through family members?

You may be more likely to get kidney disease if you have a close relative with kidney disease. You get your genes from your parents, and your genes can also make you more at risk for (or help protect you from) diabetes, high blood pressure or kidney disease.

How do I get tested for kidney disease?

Kidney disease often shows no symptoms until your kidneys are irreparably damaged, meaning the only way to know how well your kidneys are working is to get tested. This process is essential for people who have diabetes, high blood pressure or a family history of kidney disease. Diagnostic tools may include:

  • Ordering blood tests to determine how well your kidneys filter waste by measuring your levels of creatinine (a waste product found in your blood).
  • Ordering urine tests to check for protein or blood in your urine.
  • Measuring your blood pressure. High blood pressure can both cause kidney disease and be caused by kidney disease.
  • Your doctor may order other tests as needed, such as x-rays, a kidney biopsy, ultrasounds or scans.

What should I do if I am diagnosed with kidney disease?

Gather your questions and ask your doctor about your condition and treatment. Ask what type of kidney disease you have and let your doctor know of any immediate family member who also has kidney disease, such as a parent, grandparent or sibling, or of other close family members, such as aunts or uncles. Telling your doctor about family members who have kidney disease or have been on dialysis or received a transplant is crucial so your doctor can better understand your kidney disease and how to treat it.

While we do not always know what causes kidney disease, determining the cause can help you find the best treatment. The main treatments for kidney disease are medications. Some medicines can stop further damage to your kidneys. Doctors will prescribe blood pressure medications to people with kidney disease. Other common medications used for treating kidney disease include prednisone (a type of steroid) and other immunosuppressants, which help to keep your immune system in check. If your kidneys are severely damaged, your doctor may prescribe dialysis treatments and/or a kidney transplant. There are currently several new medical therapies for treating kidney disease in development and tested through clinical trials. Participating in a clinical trial is another option for you and your doctor to consider while treating your kidney disease. You will be closely monitored and will have better and more frequent access to expert care. 

Is there a cure for kidney disease?

There is no cure for chronic kidney disease at this time, but treatment can help relieve the symptoms and stop them from getting worse. Your treatment will depend on the stage of your chronic kidney disease. The main treatments are lifestyle changes in order to help you stay as healthy as possible.

Why is maintaining healthy blood pressure important to controlling kidney disease?

High blood pressure can damage the blood vessels in your kidneys. If the blood vessels become damaged, your body cannot deliver enough blood to the filters in your kidney, causing the filters to weaken or harden. Elevated blood pressure causes parts of your kidney to stop working, meaning it can no longer remove wastes and extra fluid from your body. For most people, their blood pressure should be kept at 120/80. Ask your doctor for your specific blood pressure goal.

How can I protect my kidneys?

The following are some tips to protect your kidneys and keep them healthy:

  • Keep active and fit.
  • Control your blood sugar (under a doctor’s supervision).
  • Monitor your blood pressure. The normal range is 120/80.
  • Monitor your weight and eat a healthy diet. Work with a certified dietitian.
  • Drink plenty of water and refrain from sugary drinks.
  • Do not smoke.
  • Be aware of the number of over-the-counter medications that you take and let your doctor know.
  • Have your kidney function tested if you are at high risk.
  • Limit alcohol consumption.

Does kidney disease increase my risk for other health problems?

If your kidneys are damaged and not working correctly, you are at greater risk for other health issues. For instance, kidney disease increases your risk for heart disease and stroke. The kidneys also help make red blood cells that carry oxygen throughout the body. If your kidneys are not working as they should, your red blood cell level can drop too low, causing anemia. Having kidney disease can also lead to high levels of phosphorus and potassium in your blood. High phosphorous levels can drain your bones of calcium and weaken them. High potassium levels can increase your risk for heart rhythm problems, which can be dangerous.

What happens if my kidneys stop working?

Kidney disease can lead to kidney failure. Kidney failure means your kidneys no longer work, which causes toxins, waste products and fluid to build up in your body. There is no cure for kidney disease, but life-saving treatments are available if your kidneys fail. Dialysis is a treatment that filters your blood and removes toxins, waste products and excess fluids. You may also be a candidate for a kidney transplant. A kidney transplant is not a cure. It is a treatment and it allows many people to live longer.

What is a nephrologist?

A nephrologist is a type of doctor who specializes in diseases and conditions that affect the kidneys. They work to treat conditions such as chronic kidney disease, kidney infections and kidney failure. Not only do nephrologists have expertise in diseases that specifically affect the kidneys, but they are also knowledgeable about how kidney disease or dysfunction can affect other parts of the body.

How do I know if I need a nephrologist?

Although your primary care doctor will work to help prevent and treat the early stages of kidney disease, your doctor may refer you to a nephrologist to help diagnose and treat more severe or complex kidney conditions.

Understanding Lab Values

Click the button below to view a comprehensive list and an explanation of lab values that you may see as a patient with rare kidney disease.

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Why do you need to be familiar with your lab values?

For a patient with a rare kidney disease, understanding their lab values is paramount for several reasons. Firstly, it empowers the patient to actively participate in their own healthcare management. By comprehending their lab results, the patient gains insight into the functioning of their kidneys, allowing them to monitor changes and trends over time. This understanding fosters informed decision-making regarding lifestyle choices, medication adherence, and adherence to dietary restrictions prescribed by their healthcare provider. Moreover, it facilitates effective communication between the patient and their healthcare team, enabling discussions about treatment options, potential complications, and necessary interventions. Ultimately, a thorough grasp of lab values empowers the patient to advocate for their own health and collaborate more effectively with their healthcare providers in managing their rare kidney disease.

Finding the Right Doctor

Having a good doctor-patient relationship is crucial for managing the challenges that come with Rare Kidney Disease. With the right doctor by your side, you can feel more confident and supported in your health journey, which can make a big difference in your overall well-being.

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The Right Kidney Doctor Is:

  • Knowledgeable about your specific kidney disease
  • An active listener
  • Informed about recent kidney disease research and clinical trials
  • Takes time to answer your questions and concerns
  • Easily accessible
  • Honest, factual and provides a great bedside manner
  • Willing to have tough conversations with you
  • Acknowledges your role as an active member of your care
  • Includes you in the care-planning process and integrates your goals into your care plan

Does Kidney Disease Run in Your Family?

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Does anyone in your family (including grandparents, aunts, uncles, or cousins) have kidney disease?

Do you have high blood pressure that is hard to control?

Are you Black, African American, Afro-Latino, Afro-Caribbean, or of African ancestry?

Family history can put you at risk for kidney disease. If you answered “yes” to one or more of these questions above, consider asking your doctor about a genetic test for kidney disease. Knowing your genetic makeup can help determine if you are at risk for kidney disease and, ultimately, may help delay or postpone your need for dialysis or kidney transplant. People who are Black, African American, Afro-Latino, Afro-Caribbean or of African ancestry are at higher risk than other groups for having variations of the APOL1 gene that are connected to early-onset kidney failure (meaning kidney failure that happens earlier in life than is typical, as early as childhood through young adult years).

Genetic testing is a type of medical test that identifies changes in chromosomes, genes or proteins. The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person’s chance of developing or passing on a genetic disorder.

Please talk to your family doctor or kidney doctor about the importance of knowing if you are at risk for genetic kidney disease. Also, ask your doctor to identify a trusted testing site where genetic testing is affordable

Genetic Testing Recourses:

Natera (www.natera.com)

APOL1 Gene Testing Services at Wake Forest Innovations (www.apol1genetest.com)

Rare Genomes Project (www.raregenomes.org)

Dealing with Insurance Headaches

Female Doctor with concern on her face while holding her cell phone up to her ear.
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Nephrotic Syndrome patients have some unique challenges when dealing with insurance coverage for their treatments. Here are some tips to help you be your own best advocate when it comes to insurance headaches.

Challenges


Because NS diseases are rare, the insurance approval process may be slow or lead to confusion with insurance coverage. Often approval for some medications require specific disease codes.


Nephrotic syndrome is a chronic illness, and doctors often try prescribing a variety of medications until something is effective. Second opinions, ER trips and doctor visits add to the frequency and complexity of insurance interactions.


Many treatment options are off-label and many are expensive and unfamiliar to insurance companies.


Things You Can Do To Make It Easier

1

Become very familiar with your insurance policy: how do referrals, out of network services, prior authorizations, and off label treatments impact your claims? Knowledge is power!

2

Keep your records well-organized. This is especially important if you have to appeal a decision (and you probably will at some point).

3

Ask your insurer for a dedicated case manager – this person will become familiar with your situation and will be able to answer questions for you.

4

Don’t panic if your claim is denied – claims processors aren’t doctors (sometimes they’re actually computers) so errors are common. Often, a simple phone call can clear things up. If not, you have options to appeal