How to Monitor Proteinuria and Blood Pressure at Home When You Have FSGS

Knowing Your Baseline

To catch changes at home, you first need to know your baseline numbers, meaning the proteinuria and blood pressure ranges that are typical for you when your condition is stable. Ask your nephrology care team what your baseline numbers are, as the range for both proteinuria and blood pressure depends on many factors.

When you discuss your baseline with your care team, be sure to ask which blood pressure and proteinuria readings should prompt a call to the office.

Tracking Proteinuria

Standard urine dipsticks measure several things at once, including blood, glucose, and white blood cells, says Michalopulos, so make sure you’re looking specifically at the protein result on the strip. Albustix, which checks for urine protein only, is another option available at pharmacies and online, he says.

Tips for Getting Accurate Results

To get the most accurate result possible, Michalopulos shares the following tips:

• Use a clean collection cup and a fresh urine sample (not from the toilet bowl).
• Test your first morning urine sample when possible for more consistent results.
• Follow the package directions carefully, including how long to wait before reading the strip.
• Read the results in good lighting.
• Avoid testing during your menstrual period or within 48 to 72 hours before or after it ends, as it can cause a false positive.
• A urinary tract infection or kidney stones can affect the results, so let your care team know if any of these apply to you.

When to Test

If your numbers are within your baseline, checking every one to two weeks may be enough, says Michalopoulos. He notes that your care team might ask you to check more frequently — and they can tell you exactly how often — in these circumstances:

• You are sick or recovering from an illness.
• You have more swelling than usual.
• You notice darker or frothier urine.
• You have higher blood pressure readings than usual.
• You recently started, stopped, or changed a medication.
• You may be having signs of a relapse.

Reading the Results

And if an increase in urine protein occurs along with higher blood pressure readings or swelling, notify your care team right away, says Klein, because this can be a sign of worsening kidney function that needs immediate attention.

Managing Blood Pressure

How Often to Check

If your numbers are staying within your baseline, checking three times a week may be enough, says Michalopulos. But your care team may recommend more frequent checks — sometimes once or twice a day, according to Garimella and Michalopulos — in these situations:

• You’re newly diagnosed with FSGS.
• There have been changes to your medications.
• Your numbers have been running higher than usual.
• You notice more swelling or headaches.
• There’s worsening proteinuria.
• Your home readings are very different from your clinic readings.
• You’ve been sick.

Know the Proper Technique

• Avoid caffeine, smoking, and exercise for about 30 minutes before checking.
• Rest quietly for about five minutes before checking.
• Follow the manufacturer’s instructions to wrap the cuff around your arm.
• Keep the cuffed arm on a flat surface, like a table, at heart level.
• Sit up straight with your feet flat on the floor and your back supported.
• Avoid talking during the reading.
• Try to check your blood pressure around the same time each day for consistency.

Reading the Results

When you have FSGS, blood pressure goals can vary from person to person based on age and other factors, says Michalopulos. Ask your nephrologist what blood pressure range is recommended for you.

Logging Your Numbers

You can use a notebook and divide each page into columns with labels to log your blood pressure and proteinuria results. The American Heart Association and the American Kidney Fund have free printable blood pressure log sheets.

To make your data accessible on the go, apps like Apple Health or Google Health Connect may be helpful. Many Bluetooth-enabled blood pressure monitors sync to these apps, so your readings are recorded automatically.

• The date and time of the reading
• Your blood pressure reading (both systolic and diastolic)
• Your urine dipstick result
• Any symptoms, such as swelling in your legs or feet, foamy urine, headaches, dizziness, and unusual fatigue
• Anything that may have affected the reading, such as illness, stress, poor sleep, and medication changes

When to Call the Doctor

As you monitor your readings at home, Garimella and Klein recommend contacting your nephrologist if you notice:

• Blood pressure readings that are higher than usual for you
• A urine protein dipstick result that’s higher than normal
• More swelling in your legs, feet, hands, or face
• Much less urine than usual
• Nausea or vomiting
• New or unusual itching

The Takeaway

• When you live with focal segmental glomerulosclerosis, it helps to keep an eye on your blood pressure and urine protein at home to catch changes in your kidney health early and keep your care team informed between visits.
• Urine dipsticks and upper-arm blood pressure monitors are tools that you can use at home, but also ask your nephrologist what your baseline numbers are and which changes should prompt a call to the office.
• Use proper technique, test on the schedule recommended by your care team, and keep a log of your readings and symptoms.
• Seek immediate medical attention if you develop severe headache, chest pain, or shortness of breath, or if you suddenly feel very unwell, since these can be signs of dangerously high blood pressure or worsening kidney function.