Chances are your role as caregiver took shape even before your loved one with complement 3 (C3) glomerulopathy knew exactly what they were dealing with. The first symptoms of this condition – blood and protein in the urine – can be signs of many other conditions. Investigating these symptoms to get a clear diagnosis can require several different tests. Ultimately, the diagnosis of C3G requires a kidney biopsy.
“C3 glomerulopathy can be a diagnostic challenge,” says Kirk Campbell, MD, professor of medicine at Icahn School of Medicine at Mount Sinai. “Leading up to the diagnosis, symptoms such as edema from fluid retention, fatigue, nausea, and weakness from kidney function deterioration can occur.”
C3 Glomerulopathy Challenges
A little over half of all people with C3 glomerulopathy say that the disease affects their daily life significantly. When the kidneys don’t filter well, which is what happens in this condition, it can cause joint pain, eye problems, and even kidney failure.
Signs of kidney failure include:
- Lack of appetite
- Trouble sleeping
- Dry and itchy skin
- Nighttime muscle cramps
Even treatment can cause symptoms that need management. For example, some cases of C3 glomerulopathy can be triggered by autoantibodies – immune system proteins that mistakenly attack your own tissue as if it were a germ. If your loved one has this type of C3 glomerulopathy, they may take medication that calms their immune system. But this puts them at higher risk for infections.
In this case, it’s especially important to encourage good hygiene and watch for signs of sickness.
- Remind them to wash their hands and carry hand sanitizer for when water and soap aren't available.
- Take over chores that might involve germs or bacteria, such as yard work, taking out the trash, cleaning bathrooms, and changing cat litter.
- Cook using good food safety practices. Rinse fruits and veggies thoroughly, and cook meat fully before serving.
Any of these disease- or treatment-related symptoms and side effects may mean your loved one needs extra care and help with daily living. Their exact needs will depend on the severity of their disease.
Caregiver as Care Coordinator
As a caregiver, you might need to attend doctors’ appointments with your loved one and coordinate their care. You can be helpful by watching for changes in your loved one’s overall health. Talk with your loved one and their doctor if you notice new or worsening problems.
“Caregivers can be very helpful throughout the diagnostic and treatment periods, encouraging and facilitating close communication with the treating nephrologist and recognizing signs that the treatment regimen may need to be modified,” says Campbell.
Here are a few ways you can be an advocate for your loved one’s care when needed.
Learn about C3 glomerulopathy. When you educate yourself about this condition, you’ll be better equipped to ask the right questions and understand the answers at medical appointments. Getting informed may also help you anticipate and prepare for your loved one’s changing needs as the disease progresses. Make sure you get information about this disease from trusted and credible sources, such as the websites of the National Kidney Foundation and the National Organization for Rare Disorders.
Prepare for medical appointments. Go to appointments prepared with your own questions and make sure your loved one gets to ask theirs, too. Plan to take notes. Bring a paper and pen or use a tablet or smartphone. During appointments, help to make sure that your loved one understands all the information and that they are included in the conversation.
Organize medical information. Spend some time setting up a system for medical and legal documents so they’re up to date and easy to find. This will save you time and energy when you need them later on.
If you play a role in selecting providers for your loved one, Campbell stresses the importance of getting care from a specialized multidisciplinary team that includes doctors, nurses, dietitians, social workers, and counselors.
Keep an Eye on Emotional Health
C3 glomerulopathy has clear effects on physical health, but it can take a toll on mental health, too. Doctors can’t always predict how quickly or severely C3 glomerulopathy will progress, which can make it hard to think about and plan for the future. Even if treatment brings the disease into remission, Campbell says, it’s still not possible to cure C3 glomerulopathy.
“The prognosis for C3 glomerulopathy is highly variable,” says Campbell. “A lot depends on how severe the kidney disease is at the time of diagnosis.”
People with C3 glomerulopathy often deal with anxiety and depression about their disease. Because it’s a rare disease, some people may feel alone in their journey. That’s why mental health care and a good support network, including health care providers, friends, family, and others with this condition are important.
“Groups such as the Nephcure Foundation and the National Kidney Foundation have resources and support available, including updates on new treatment options and clinical trial opportunities,” says Campbell. “Support groups and patient and family forums through groups like Nephcure can be very helpful.”
Look Out for Your Own Health, Too
Caregiver burnout can easily happen when you’re caring for a loved one but not for yourself. Burnout can make you:
- Feel emotionally and physically exhausted
- Withdraw from family and friends
- Be irritable
- Lose your appetite and lose weight
- Get sick often
- Change your sleep patterns
If you have these symptoms, here are some ways you can begin to take better care of yourself:
Seek out support from other caregivers. Most people with experience caring for a loved one can offer insight and understanding that you will find beneficial. Those who care for someone with kidney disease, especially C3 glomerulopathy, can relate to your specific situation. Look to C3 glomerulopathy support groups or organizations such as the Caregiver Action Network for connections.
Accept offers of help. When others want to lend a hand, let them. Better yet, come up with a list of tasks you can dole out when the offers come.
Take breaks. It’s OK to take time out if you’re feeling overwhelmed or exhausted. The more support you gather around you, the easier it will be to step back and care for yourself when you need to. That way, you can bring your best self to your caregiving role.
Take care of your own health. Caregivers often overlook their own health care needs. You need your strength to be strong for others. Exercise, eat a healthy diet, stay on top of routine preventive care appointments for yourself, and fit a little fun into your schedule when you can.
Getprofessional help when you need it. If you do recognize signs of burnout, consider getting a counselor or therapist for yourself so you can vent, share concerns, and get your own needs met.
Photo Credit: Burak Fatsa
Kirk Campbell, MD, professor of medicine, Icahn School of Medicine, at Mount Sinai.
National Kidney Foundation: “Voice Of The Patient,” “Complement 3 Glomerulopathy (C3 glomerulopathy): Knowing the Signs and Symptoms,” “Treatment for C3 glomerulopathy.”
Harvard Health: “Six ways you can help your immune system.”
Cleveland Clinic: “Caregiver Burnout.”
Caregiver Action Network: “10 Tips for Family Caregivers.”