Living With a Rare Kidney Disease

Reviewed by: HU Medical Review Board | Last reviewed: February 2023

Most rare kidney diseases last a long time. There is no cure, and they often do not go away on their own. This can make living with a rare kidney disease from day to day challenging.1,2

Each person’s journey with kidney disease will be different. But good communication, a strong support system, and certain lifestyle changes can help keep everyone as mentally, emotionally, and physically well as possible.1,2

Maintain open communication

Over time, new symptoms, concerns, or questions will come up with your rare kidney disease. This is normal, no matter how long you have been living with the condition. But balancing them can be a source of stress.1-3

Creating a plan for communicating with your healthcare team can help you get the answers you need quickly. Topics you and your doctor might want to plan ahead for include:1-3

  • What to do if you have questions about treatment doses or plans
  • What concerning signs to look for
  • Who to contact if you have new or worsening symptoms
  • How often you need follow-up appointments or lab testing
  • Who to contact outside of regular business hours
  • Who to contact if you have trouble with health insurance, transportation, eating a healthy diet, or getting your medicines
  • What to do if you need to move, start a new job, or have other life changes come up

These are not all the topics that might be helpful to talk through with your doctor. Make your own list as soon as possible after you are diagnosed with a rare kidney disease. Finding ways to maintain easy communication with those on your care team will help you manage any issues that arise quickly.1-3

Build a support system

Living with a chronic condition like a rare kidney disease can take a toll on your mental and emotional well-being. It is normal to feel overwhelmed, sad, or anxious throughout your journey. No matter how long you have been dealing with a health condition, these feelings may come up.1-3

You cannot be your best physically if you are not taking care of yourself mentally and emotionally. Check in with yourself regularly. Ask yourself whether you need some extra support in that moment.

Sometimes, it may be helpful to talk with a trained mental health professional to help you cope. This can be a social worker, therapist, counselor, or psychiatrist. Other times, you might need to simply catch up with a friend or family member.1-3

Another option is to find a support group. Depending on how rare your specific disease is, it may be hard to find people near you to connect with. If you do not know where to start, talk with your doctor. They might know of a support group in your area.1,3

Also, an online support group can help connect you with people from distant locations and make your rare disease community easier to get in touch with. These communities are available almost any time, day or night.

Consider your diet

Each person’s rare kidney disease will be different, even for people with the same underlying disease. Some people with kidney disease benefit from specific diets. Kidney-friendly diets may include changes to salt and protein intake. They also may focus on balancing other electrolytes like potassium or phosphorus.2-6

Your diet needs can change over time based on how severe your kidney disease is. There also may be new changes required if you are starting dialysis or preparing for a kidney transplant.5

Talk with your doctor about your specific dietary needs. Ask them to connect you with a dietitian or nutritionist. This person can help you craft meal plans that are healthy, helpful, and simple. They can also tell you what foods or supplements (like vitamins or herbal supplements) you should avoid.2,3,6

Create an exercise plan

Each person’s exercise abilities or tolerance can be different. But if done safely, exercise can be helpful in managing kidney disease. It can:1-3,7

  • Help control blood pressure
  • Reduce the risk of other health conditions
  • Prevent injuries

Being physically active can mean doing anything from gardening to jogging around the block. There are many activities that can benefit your health.1-3,7

Talk with your doctor before starting any new exercise plan so they can assess how safe it is for you. They may also be able to connect you with a physical therapist, who can help you do the most beneficial exercises and do them properly. A strong exercise plan often includes being active for at least 30 minutes at a time on most days of the week.1-3,7

Quit smoking

Smoking can cause damage to the kidneys and make existing kidney disease worse. It can also raise blood pressure and increase the risk of other health issues. Quitting smoking and reducing exposure to secondhand smoke may help you manage your kidney disease.2,8

If you are looking to quit smoking but are not sure how, ask your doctor for tips. You also can call the national quitline in the United States at 1-800-QUIT-NOW (1-800-784-8669).2,8

Seek out genetic counseling

Many rare kidney diseases are genetic. This means that they are passed down from parents to children. If you have a rare kidney disease that runs in your family and are pregnant or want to have kids, visit a genetic counselor. These experts can help with family and risk planning.9

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