Take control of your kidney health: tracking your own data

Do you want to take more control of your own kidney health? In order to make smart decisions and lifestyle changes, you first need to have the right information.

There are three basic types of health data that you can collect at home:

1. Blood Sugar (Glucose) Levels
2. Blood Pressure
3. Body Weight

These three data points all work together to give you and your doctors a better idea of what is going on inside your body. In this article, we’ve outlined some background and simple steps to start collecting your own data.

“Our modern healthcare system puts all responsibility into the doctors’ hands. They collect data and make decisions, often without patients really understanding why. How could things improve if doctors and patients shared information and worked together as a team?”

Dr. Richard Gibney

The power of tracking your own data

Collecting and understanding your data is one of the first and simplest steps towards taking control of your own health. With a little intentionality and routine, almost anyone can measure their own data at home:

Step 1: Get your monitoring devices.
Ask your doctor to recommend devices for blood sugar and blood pressure. They may even be able to help you pay for it through insurance. You can also check out some great online resources to help you pick a device, including Consumer Reports. Remember, the best device is not always the most expensive.

Step 2: Learn how to use them.
Again, talk to your doctor or nurse, they can teach you how to take your own data and make sure you can get consistent, accurate results. Set clear goals that you can work towards together.

Step 3: Keep record or your data.
Some patients like to use a phone or tablet, but many still like a good old-fashioned notebook. Use whatever is most reliable for you.

Step 4: Bring your data to every doctor appointment.
Discuss your data with your doctor. Ask questions so you can better understand what’s happening inside your body and how your health is affected by diet, activity, and medications.

Tracking your blood sugar

Background

Your kidneys are an important filtration system in your body. When blood sugars get too high, the tiny capillary filters in your kidneys essentially get overloaded. This creates extra high pressure in that system. Over time, that pressure can lead to scarring and decreased kidney function.

Today, there are over 500,000 patients on dialysis, and high blood sugar is the #1 cause of progressive kidney function loss. Around 60% of patients who go on dialysis are also diabetic. These numbers are vastly greater than what we saw fifty years ago.

How can you reduce the chances of going on dialysis? Controlling your blood sugar is one of the simplest places to start.

How to read your data

These days, tracking your blood sugar is easier than ever with a continuous glucose monitoring machine from companies like Dexcom. These adhesive devices, usually worn on your arm or abdomen, continually monitor blood sugar and send that data directly to a smart phone device. That means no more pricks and finger soreness! Plus, all your data is conveniently stored automatically in one central location.

Regardless of type, glucose monitoring systems will show you a number associated with your blood sugar count. In general, you are looking for a number between 80 and 120. Below 80, you will start to experience decreased mental awareness and can even lose consciousness and require emergency medical attention. Above 120, the tiny capillary filtration system in your kidneys starts to get overloaded.

Benefits

Especially with the ability to continually monitor blood sugar levels straight from your phone, you can become empowered with both short- and long-term knowledge…

Short-term, you can correlate how your body feels with specific blood sugar numbers. You will develop a personal understanding of your body as you see how diet or exercise affects blood sugar. This real-time feedback is extremely helpful when it comes to making smart health choices!

Long-term, continual monitoring is also valuable because it shows an overview of your blood sugar trends over time. If you wait to check blood sugar at your doctor, you will only ever have a momentary snapshot of your immediate health. Remember that blood sugar is highly dependent on food and activity; one reading might be skewed based on a sweet breakfast treat or a morning walk. Long-term monitoring gives both you and your doctor the data you need to make the best decisions for your health.

Tracking your blood pressure

Background

Just like with high blood sugar, high blood pressure (HBP, or hypertension) directly correlates to stress on the capillary filtration system in your kidneys. This can lead to scarring and decreased kidney function over time.

High blood pressure is easily treated, but today, 25% of patients on dialysis are there because of high blood pressure.

Why is it still such a prevalent issue? The problem lies in the silent nature of blood pressure; many patients don’t even know they have issues until it’s too late. The solution lies in monitoring and managing your blood pressure before it becomes a problem.

How to read your data

When you take blood pressure, you get two numbers: SYSTOLIC (the upper number) and DIASTOLIC (the lower number). You may typically see the upper number associated with heart health, but Dr. Gibney explains that nephrologists often look to the lower number too. In general, he recommends keeping bottom number below 90.

Benefits

Just like with blood sugar, regular monitoring over time helps give you and your doctor a better idea of your overall health. One-time measurements aren’t always the best representation of your long-term blood pressure. Plus, some patients even deal with medical anxiety or “white coat syndrome,” meaning that blood pressure readings could be higher simply because they feel anxious in a doctor’s office.

Tracking your weight

Background

Your weight is the third piece of the puzzle that helps you and your doctor understand your kidney health. When it comes to changes in your weight, you’re not actually looking for body fat but for water retention.

Your kidneys are responsible for filtering and removing extra fluid. This fluid goes from your kidneys to your bladder before exiting your body as urine. When your kidneys are overworked, fluid builds up. We can measure that fluid as extra weight.

How to read your data

If your weight is rapidly going up (a pound or more per day) it’s not fat; it’s water. You may also have symptoms like shortness of breath swollen legs and ankles. Try pressing on your lower legs, if your fingers leave indentations, that’s a sign of water retention. Your body needs to get rid of extra fluid.

Water retention is all about balance, however. You can have too much, but you can also have too little. If your weight is rapidly going down, you may have taken too much diuretic medication. You may also have lower blood pressure. Your body needs more fluid to function properly.

Benefits

Tracking your body weight helps you and your doctor balance diet and medications to help you retain just the right amount of fluid—no more and no less. With your fluid retention under control, you will feel better and reduce stress on your kidneys.

Tips for effective data collection

If you want to make the most of your personal data and take control of your health, here are a few tips for accurate and effective collection.

1. Create a PLAN. Work with your doctor to discuss your options and create a plan that’s customized for your unique body. Set clear goals that you can work towards together.
2. Establish a ROUTINE. Set alarms or reminders to repeat each day. Find a schedule that works best for you and stick to it! Measure at the same time of day to get more accurate results.
3. COMMUNICATE with your doctor. Always bring your data to every appointment. Ask questions about how you are doing and how you can improve. It’s your doctor’s job to provide answers and guidance so you can both work as a team.
4. Celebrate PROGRESS. Monitoring your own data might seem like a small step in the grand scheme of things, but every little step adds up to real change. Take a moment every once in a while and remember to celebrate your progress towards your health goals!

“There is a disconnect with the medical establishment and the patient. They’ve been focused for 50 years on disease, but we’re moving upstream to where patients can actually do something for their health.”

Dr. Richard Gibney

Start your empowered healthcare journey today

Congratulations! You are already well on your way to taking control of our own health. When you begin to monitor your own data, not only will you find yourself with a greater sense of empowerment, control, and understanding, but you will also provide your doctors with better information the next time you visit.

Your body shouldn’t be a mystery. When you have the right tools and information, you gain a better understanding of what’s going on. If you start to feel bad at home, take your measurements and look back at your last few readings. Your data might show you that all you need is a simple adjustment to your diet, activity, or medication. And if you need to call into a nurse or doctor, you might be able to provide the information theyneed to help you remotely—all without a visit to the doctor’s office or emergency room.

Ask your doctor or nurse about at-home monitoring devices and data collection and discover how YOU can take the next step towards empowered kidney care.

“It’s so important for patients to keep track of their own data because it’s transformative. It gives them control and hope.”

Dr. Richard Gibney

Check back soon for more stories and information on how you can become an empowered kidney patient. For further reading, check out the American Diabetes Association (ADA) and the American Association of Kidney Patients (AAKP) websites.