Planning for the Future With IgA Nephropathy

Being diagnosed with a chronic kidney condition like IgA nephropathy (IgAN) can make the future feel like something to fear.

But as nephrologist Salem Almaani, MBBS, explains, facing the future head-on is one of the best things you can do for your health long term. After all, everybody’s experience with IgAN looks a little different. Understanding the factors that shape disease progression can help you feel more in control.

Dr. Almaani shares some basics of planning for the future with IgA nephropathy.

What an IgAN diagnosis means for your future

To face the future with confidence, it’s important to understand that there’s no one way IgAN unfolds — the course of the disease varies dramatically from person to person.

Understanding your prognosis is key for thinking about both big-picture questions and navigating the practical realities of daily life with a chronic illness.

“Some people with IgAN progress pretty rapidly,” Dr. Almaani says. “Others have a much, much slower progression.”

To determine where in the spectrum you’re most likely to be, your providers look at three key markers:

• The amount of protein in your pee (proteinuria)
• How often there’s blood in your pee (hematuria)
• How often your estimated glomerular filtration rate (eGFR) changes

These numbers help them understand how well your kidneys are working, how active the disease is and how well you’re responding to treatment.

Once you have a sense of what to expect going forward, you can start asking practical questions — and taking steps to support your kidney health.

Common concerns

When you’re living with IgAN, Dr. Almaani says it’s helpful to be knowledgeable and proactive about the following topics.

Having children

If you have IgAN and are considering getting pregnant, it’s important to talk to your nephrologist about it as early as possible.

The considerations around pregnancy go both ways: Being pregnant can affect your kidney health, and your kidney health can affect the course of your pregnancy.

“Talking to your nephrologist before trying for a pregnancy will give you the information you need to decide if having a biological child is the best choice for you,” Dr. Almaani states.

If you’re leaning toward trying for a baby, check to see if your provider has training in obstetric nephrology. If they don’t, request a referral. You want to work with a provider who’s knowledgeable about the risks and can adjust your medications as needed to keep your kidneys — and your pregnancy — as safe as possible.

Dr. Almaani explains that typically, women who get pregnant earlier in the course of their disease are less likely to experience complications.

“Research shows that patients with normal or near-normal kidney function don’t tend to see their kidney health decline faster during pregnancy,” he adds. Risks tend to be higher if your kidneys aren’t working well beforehand.

Even if you’re in the earliest stages of IgAN, it’s important to know that you may still have a higher-than-average risk of complications, like:

• Preterm birth
• Low birth weight
• Conditions like preeclampsia

Starting conversations about family planning early can help you make the choice that feels right for you and reduce avoidable risks where possible.

Preventing infections

Because IgAN is an autoimmune condition, you may wonder if getting sick could trigger a flare — especially if you’ve read accounts online about people seeing blood in their urine following upper respiratory infections like the flu.

“Some infections set off immune responses that trigger a disease flare. Some don’t. And we don’t have a good understanding of why,” Dr. Almaani shares. While there’s still a lot we don’t know about the relationship between infections and IgAN progression, protecting yourself against infectious diseases is always a good idea.

You can reduce your chances of getting sick by:

• Seeing your primary care provider for an annual check-up
• Practicing good hand hygiene
• Avoiding close contact with people who are unwell
• Staying home when you’re sick
• Talking to your provider about vaccines

Some find that wearing a mask at large indoor events or during peak respiratory season makes them more comfortable, too.

Another way to plan ahead: Talk to your provider about how to handle respiratory infections in light of your IgAN diagnosis. Your kidney condition may mean you need to adjust your approach to things like over-the-counter medicine use.

Living with advanced kidney disease

Typically, doctors say you have “advanced” kidney disease if your IgAN progresses to stage four. That’s often when you start talking with your nephrologist about dialysis or, in some cases, a kidney transplant.

Expect to talk with your nephrologist about:

• The best kind of dialysis for your personal circumstances
• Whether you’re a good candidate for a transplant
• Your quality-of-life priorities

Your care team may expand to include more providers, like:

• Renal dietitians
• General surgeons
• Dialysis nurses
• Transplant specialists
• Social workers

Is dialysis inevitable?

Not all people with IgAN develop kidney failure and go on dialysis. Research and treatment advances mean that some people live for decades with minimal damage to their kidneys.

And Dr. Almaani says there’s reason to be hopeful, even if you have kidney failure.

It’s a life-changing diagnosis, no doubt about it. But advances in treatment and supportive care are helping people live longer, while preserving their quality of life.

Preparation is key

Whether you’re newly diagnosed or you’ve been living with IgAN for decades, you know how hard it can be to cope with uncertainty. The good news? We know enough about this complex kidney condition to plan around the unknowns.

Working with your care team to develop realistic blueprints for the future can help you come to terms with your prognosis and lower your anxiety.

So, do what you can to educate yourself — both about the condition in general and your kidney function in particular. Understanding your circumstances can help you make informed choices, advocate for yourself and stay positive about the days to come.