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IgA nephropathy can raise some big questions. Will your symptoms be so mild you hardly notice a change in daily life? Will you need dialysis one day? Should you prepare for a kidney transplant 10 or 20 years down the road?
You may not get answers until you’ve lived with the disease for many years.
“That uncertainty is incredibly challenging,” says Susan Rubman, PhD, a medical psychologist with Yale Medicine. She treats people who get organ transplants.
You can live a long life with IgA nephropathy. But your odds of depression, anxiety, and ongoing stress are higher than someone without the condition. Along with your doctor’s help, here are steps you can take to manage your mental and kidney health.
Learn as Much as You Can About IgA Nephropathy
Ask your health care team to tell you all about your condition. While you may need to learn a little at a time, Rubman suggests taking in as much info as you can handle.
“Being an informed medical consumer is always more helpful than avoiding information,” Rubman says. “Because we’re better able to prepare.”
You can find lots of general info online. But your best bet is to ask your doctor for specifics about your health. Here are some questions to get you started:
What are the chances I’ll need dialysis?Do I need to make diet or other lifestyle changes right away?Will I need medication for the rest of my life?Do you treat other people like me? Can I meet them?Can I talk to someone who’s on dialysis or had a kidney transplant? Is there a nurse educator who can tell me more?Will I need a kidney transplant?What is the prognosis? Will this get better?
You’ll also need to go in for regular checkups and follow-up tests. Ongoing care leaves you in a better spot to manage changes as they come up. “And to be able to rejoice when things are stable,” Rubman says.
Stay Active When You Have IgA Nephropathy
Talk to your doctor before you start a new fitness routine. But regular exercise is generally a good thing for people with kidney disease. There are lots of reasons why. But some big ones are that it can help control your weight, blood pressure, and cholesterol.
For people with IgA nephropathy, studies show regular movement may also ease symptoms of mental stress and depression, boost health-related quality of life, and help the heart and lungs work better.
Yonatan Peleg, MD, is a nephrologist (kidney doctor) with Northwestern Medicine in Chicago. Along with taking your medication, he encourages everyone with IgA nephropathy to get out and move. Choose aerobic, or cardio, exercises to target blood pressure control.
Aim for at least 150 minutes of aerobic exercise each week. That’s something like brisk walking 30 minutes a day, 5 days a week. Other good choices include bicycling, running, swimming, or dancing.
You might’ve heard that working out too hard will hurt your kidneys. But heavy exercise is safe for most people with kidney disease, including IgA nephropathy. While it’s true that you may leak extra protein into your urine right after a strenuous gym session, “the blood pressure control you get from having a healthy cardiovascular lifestyle is more important,” Peleg says.
What might not be a good idea? Going overboard with those high protein shakes or bars after a workout. Get advice from your kidney doctor or dietitian before you change your nutrition plan. They’ll let you know how much protein is safe.
Tell Your Doctor About Your Emotions
A lifetime illness can ramp up feelings of sadness or anxiety. And it’s natural to need some time to get used to hard news. But if your symptoms last several weeks or get in the way of daily life, tell your doctor. You might think they only care about your kidneys. But that’s not necessarily true.
“For one, I’m worried about [your] overall health,” Peleg says. “But if depression leads to not exercising as much or making the wrong food choices, that can lead to worsening blood pressure and worse IgA outcomes.”
Poor mental health can also make it hard to get medical care when you need it or stick with treatment. It may even affect how well you do after a kidney transplant.
Besides your kidney doctor, there are lots of other health professionals you can turn to if you’re having a tough time. According to Emily Duggan, PhD, a neuropsychologist and assistant professor with Johns Hopkins School of Medicine, that includes your regular doctor, social workers, nurses, or the care team at your dialysis center. “Really anybody is receptive to talking,” Duggan says.
Find What Works for You
There’s more than one way to manage your mental health. Some things you can do on your own. Talk to your doctor for more ideas on self-care with kidney disease. But here are some expert tips on what may help you feel less stressed:
Make sleep a priority.Get enough exercise and the right nutrition. Try deep breathing. Practice mindfulness meditation.Reach out to friends, family, or your spiritual community.
You may also want to connect with someone who has IgA nephropathy or another chronic kidney disease. “It can be helpful to have support from folks who know what you’re going through,” Rubman says.
Antidepressant medication or talk therapy can also be a big help. Your doctor might suggest cognitive behavioral therapy (CBT). That’s a skills-based talk therapy. It’s been shown to ease symptoms of depression and anxiety in lots of people, including folks with chronic kidney disease and those on dialysis.
Behavioral therapy usually doesn’t dive deep into your past. “This is not the kind of therapy where you lay on a couch and talk about your childhood,” Duggan says.
CBT helps you find ways to push back against the hard times you’re having now. And if you have IgA nephropathy, behavioral therapy can help you better understand the link between your illness and how you think, feel, or act. If you try therapy, don’t worry if you’re not sure what to talk about.
“All you have to know is that you would like some help,” Duggan says. “And the therapist is there to help walk you through every single step from there on out.”
If you think you might hurt yourself, call 988 to reach a suicide and crisis counselor 24 hours a day, 7 days a week.
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