Living with IgA nephropathy

IgA nephropathy (IgAN or Berger’s disease) is a chronic (long-term), progressive, autoimmune kidney condition marked by deposits of abnormal immunoglobulin A protein inside the filtration units of your kidneys (glomeruli). It is one of the most common causes of chronic kidney disease.

Living with IgAN can be stressful and may involve making changes to your lifestyle or diet or taking medication. These changes may take time to get used to, but it’s possible to live a full life with IgAN.

Building a routine for medicines

Managing IgAN can often involve daily medications to control your blood pressure and prevent disease progression. Staying consistent with your medication is an important part of managing IgAN and preventing kidney damage. If you have trouble maintaining a regular medication routine, consider talking with your doctor about strategies for remembering, or ask your loved ones for help in managing your medication.

Blood pressure medication and other IgAN treatments may interact with other medications, so make sure to discuss any medications or dietary supplements you take with your doctor or pharmacist. Because IgAN medication can affect the fluid balance in your body, reach out to your doctor if you’ve been sick and unusually dehydrated or have a medical procedure coming up. You may need to pause or adjust your medication during those times. However, never make changes to your medication dose without talking to your doctor first.

Tracking blood pressure, symptoms, and test results

Another component of living well with kidney disease is regularly monitoring your blood pressure, kidney function, and symptoms. IgAN progression can be unpredictable, and some people experience disease relapse (return of symptoms) or progression after many years without symptoms.

Talk with your care team about how often you should see them for monitoring, and what symptoms to watch out for. Keeping a record of your symptoms to share with your doctor may help identify new changes and side effects more quickly. Your doctor may ask you to regularly measure your blood pressure at home. Always keep a log of your readings, either on your phone or on paper, and bring it to your appointments to share with your doctor.

Food that promotes kidney and heart health

Following a kidney-friendly diet is often recommended as part of a healthy IgAN lifestyle. In general, experts recommend staying well hydrated, following a low-salt and protein-controlled diet, and avoiding alcohol to minimize the stress on your kidneys.

Dietary recommendations are highly individual and may vary depending on your symptoms, disease stage, and age. Talk with your doctor or a dietitian familiar with kidney disease about the best diet for you. Also, review any vitamins or supplements you take or are considering taking with your kidney doctor to ensure they are not harmful to your kidneys.

Kidney function and cardiovascular health can influence each other. To support your cardiovascular health, your doctor may recommend following a low-cholesterol diet or taking medication to help control your cholesterol.

Exercising and staying active

In addition to following a healthy diet, staying active and maintaining a healthy weight can help keep your kidneys healthy and control your blood pressure. Experts often recommend aiming for about 150 minutes of moderate-intensity cardiovascular exercise each week. Since high-intensity exercise, especially short bursts of activity like heavy weightlifting, can cause sudden spikes in blood pressure, your doctor may recommend that you limit or avoid those activities.

Managing fatigue and conserving energy

IgAN can affect your energy levels and cause fatigue (extreme tiredness), especially if your kidney function is reduced. If you notice that you’re much more tired than usual, you may want to talk to your doctor, because that may be a sign your kidney function is getting worse. In day-to-day life, you may want to take steps like making time for extra naps and breaks, talking to work or school about a modified schedule if you need one, and asking for help if you’re having trouble keeping up with your responsibilities.

Managing work and school

Work with IgAN may come with extra challenges due to fatigue and frequent medical appointments. Depending on how IgAN affects your life, you may qualify for accommodations under the Americans with Disabilities Act. If you’re having trouble keeping up with your normal schedule, consider talking with your teachers or supervisors about options for a modified schedule or other accommodations.

Travel tips

It’s still possible to travel with IgAN and kidney disease, even if you need dialysis. However, you may want to take a few extra steps to prepare for a healthy travel experience.

Some recommendations for travel with IgAN include the following:

• Bring enough medication to last several days beyond your planned trip in case you are delayed unexpectedly, and carry a copy of your prescription. Always keep your medication with you in your carry-on bag. If you’re traveling internationally, ask your doctor whether you need any additional documentation.
• Consider making arrangements ahead of time, such as requesting low-salt inflight meals, to make sure that you’ll have access to food that fits your diet requirements.
• Consider asking for assistance in the airport and booking a first-floor or accessible room if stairs or walking long distances is difficult.
• If you’re on dialysis, you may want to contact dialysis centers in your destination area before your trip to make arrangements. Make sure to bring copies of any dialysis orders and other documentation you may need.

Emotional well-being and coping with uncertainty

Many people with IgAN say that the unpredictability of the disease can be difficult to live with, and that fatigue and other IgAN symptoms can have a mental and emotional toll. Taking care of your mental health during chronic kidney disease is very important. If you find that you’re having trouble with anxiety, depression, or other mental health symptoms, consider talking to your doctor or finding a mental health professional with experience treating people with chronic disease.

Relationships and family planning

Unfortunately, IgAN and kidney disease can increase your risk of pregnancy complications, including preterm birth and preeclampsia (very high blood pressure during pregnancy, which can be a medical emergency). In addition, not all IgAN medications are safe to take while pregnant or breastfeeding. If you are thinking about getting pregnant, consider talking with your doctor about how to prepare and prevent complications.

Preparing for appointments

IgAN monitoring and treatment can involve many medical appointments, and staying on top of your appointments and medications is an important part of IgAN self-management.

To help prepare for appointments, consider taking steps such as the following:

• keeping a symptom log to share with your doctor
• bringing your blood pressure log to every doctor’s appointment
• bringing an up-to-date medication list so your doctor can review what you are taking at home
• writing down any questions or important changes you want to report before the appointment
• using calendars, reminders, or other tools to help keep track of your appointments, tests, and medications

Finding reliable information and support

In addition to talking with your care team, patient support organizations can be a useful resource. Some medical centers may have in-person support groups for people with chronic kidney disease. Organizations such as the National Kidney Foundation and the IgA Nephropathy Foundation can also be good sources of resources and provide a supportive community that understands IgAN daily life.

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IgA Nephropathy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.