Most people with chronic kidney disease (CKD) can attend school or work without any issues. Daily life may take some extra planning, though, especially if you live alone with a kidney condition.

If you have complement 3 glomerulopathy (C3G) or immune complex membranoproliferative glomerulonephritis (IC-MPGN), a few simple steps can help you feel more prepared.

Here’s what you should know if you’re preparing to live independently with C3G or IC-MPGN.

What Are IC-MPGN and C3G?

Both C3G and IC-MPGN are rare kidney diseases caused by problems with the immune system. These diseases affect the glomeruli, the tiny clusters of capillaries that filter blood in the kidneys. Glomeruli help remove waste products and toxins from the blood while keeping important substances like proteins.

🗳️ What feels hardest when living on your own with C3G or IC-MPGN?

Keeping up with medications

Following a kidney-friendly eating plan

Tracking symptoms and appointments

Knowing when to ask for help

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These conditions cause specific proteins or immune system substances to build up in the glomeruli. This buildup can lead to inflammation and make it harder for the kidneys to filter waste and extra fluid from the blood. Over time, this process can damage kidney function and your overall health.

How These Conditions Affect Daily Life

Not everyone with C3G or IC-MPGN has the same symptoms. Some possible symptoms stem directly from the condition, and others stem from the resulting kidney damage.

Symptoms of C3G and IC-MPGN may include:

• Swelling, especially in the arms and legs
• Blood in the urine
• Foamy urine due to a buildup of proteins
• Hypertension (high blood pressure)
• Fatigue (persistent tiredness or weakness)
• Trouble feeling alert

Having these symptoms can affect your energy and interest in activities. Living with CKD can also affect your mental health. That’s why it can help to plan ahead before living on your own.

Navigating Independence With C3G or IC-MPGN

Your care team will create a treatment plan to help you control C3G or IC-MPGN. Managing CKD can help you avoid worsening symptoms or disease complications.

In some cases, people with these conditions eventually develop kidney failure. This complication requires going on dialysis or having a kidney transplant. Staying on top of your treatment plan for C3G or IC-MPGN can help reduce the risk of complications.

Consider trying some of the tips below to help you stay in the best possible health while managing life on your own with C3G or IC-MPGN.

Manage Your Medications

To manage C3G or IC-MPGN, your doctor may advise you to take certain medications. These drugs can help slow down kidney damage and reduce your symptoms. For example, certain drugs may help you stabilize your blood pressure or reduce the amount of fluid in your body.

Always take these medications exactly as prescribed. It’s also important to keep a current medication list somewhere handy (such as on your phone or in your wallet).

Some people find that using a pill organizer helps them stay on track with all of their medications. Others use apps or timers on their phone to remind them when to take their drugs. Whatever works best for you is the most effective plan to stay on track with your CKD medications.

If you forget to take your CKD medication, it’s usually a good idea to take it as soon as you remember. One exception is if you don’t remember until it’s almost time to take the next dose. In that case, skip the original dose and only take the next scheduled one so you don’t double up on medication.

If you are not sure whether you should take a dose, call your pharmacist. They can advise you about missed doses.

Work With Your Pharmacy

If you’re moving somewhere far from your current pharmacy, you may need to set up an account with a new one. Make sure any pharmacies you’re considering accept your insurance plan.

Some drugs require your insurance company to provide a prior authorization (preapproval) before the pharmacy can dispense them. This means your healthcare provider and the pharmacist would have to work with the insurer to complete the authorization.

Other insurers may not fill the exact quantity your doctor requests. Your pharmacist can help you work with the insurer to iron out these issues. You can also ask your doctor if the medicine will be covered by your insurance and what the requirements will be.

Because these issues can lead to delays, it’s a good idea to refill your medications well before you run out. Ask your pharmacy whether they can automatically refill any medication that’s running low so you never have to miss a dose.

Try to use the same pharmacy for all of your medications. That way, your pharmacist will be able to alert you if any of your drugs might interact poorly with one another.

Maintain a Monitoring Plan

It’s a good idea to create a health monitoring plan so you can stay as healthy as possible while living independently. This plan includes seeing your doctor regularly so they can monitor your condition. Your nephrology team will explain how often to come in, which may range from every month to every six months or so.

Your doctor will evaluate your kidney health using exams and lab tests. These tests can include:

• Urinalysis — The doctor measures the protein and red blood cell levels in your urine.
• Blood tests — The doctor looks for markers in your blood, such as creatinine, albumin, and urea nitrogen, all of which signal how well your kidneys are working.
• Blood pressure testing — The doctor evaluates whether your blood pressure is within a normal range.
• A physical exam — The doctor evaluates any weight changes and looks for swelling or other potential signs of kidney damage.

Know When To Call the Doctor

Even with proper monitoring, you may sometimes notice new or worsening symptoms that need medical care right away.

Reach out to your nephrologist or another healthcare professional if you notice:

• Sudden or drastic increase in your blood pressure
• Reduced urine production (or not urinating at all)
• New or sudden swelling
• Vomiting or nausea
• Blood in your urine (which may appear dark or cola-colored)
• Difficulty breathing
• Confusion or light-headedness
• Increased or extreme thirst

Plan for Emergencies

Plan ahead so you’re ready for emergencies or days when symptoms flare. Your emergency prep plan may include:

• Having a medication list on hand
• Knowing where to find recent medical records, such as biopsy or lab results
• Understanding how to request a sick day at work or school
• Having at least two weeks’ worth of medications on hand
• Keeping your doctor’s phone number nearby
• Using a medical alert bracelet, key fob, or app so emergency providers know about your diagnosis

Develop Your Eating Plan

People with C3G or IC-MPGN can help control their health by following a kidney-friendly eating plan and exercising regularly. Your doctor will advise you about any foods to eat or avoid. In general, doctors advise many people with CKD to:

• Limit their sodium (salt) intake by cutting down on salty ingredients
• Adjust their protein intake or change the types of protein they consume
• Limit their intake of fats or change the types of oils they use in food
• Adjust how many calories they consume

Your nephrologist can refer you to a dietitian if you need help developing a kidney-friendly eating plan.

Monitor Your Overall Health

Some people with C3G or IC-MPGN are advised to incorporate other lifestyle changes into their routines to stay as healthy as possible. For instance, your kidney specialist may advise:

• Avoiding nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen
• Updating your vaccinations to ensure you don’t get an infection
• Getting enough rest

Avoid trying any supplements or other home remedies without first consulting your nephrology team. These unregulated treatments can sometimes interfere with kidney health or your existing treatment options.

Build a Support System

Whether you choose to explain C3G or IC-MPGN to friends, employers, roommates, or romantic partners is completely up to you. But even if you don’t disclose your diagnosis, it’s still important to have a support system in place.

Meeting with other people who have CKD, joining a support group, or speaking with a counselor can help you get support while you’re navigating CKD. Ask your healthcare team for a list of resources if you don’t have a support network. They can help you identify support team members so you don’t feel alone with C3G or IC-MPGN.

Join the Conversation

On MyKidneyDiseaseTeam, people share their experiences with kidney disease, get advice, and find support from others who understand.

What tips do you have about maintaining a good quality of life while living with C3G or IC-MPGN? Let others know in the comments below.