| Dialysis | Kidney disease | Patient stories | Transplant

When You Can't Do It All–Living with End-Stage Kidney Disease

November 10, 2022, 10:07am EST

Persona relajada en el sofá

As kidney function slows down and toxins build up, you may feel sick, experience muscle cramps, or have trouble sleeping. As a result, everyday tasks may become more physically or emotionally exhausting. While this can be overwhelming, we’re here to help with three simple tips you can use today. 

1. Make a plan of action

person writing in notebook at dining room table

Break out a planner, a notebook, or a whiteboard, and get ready to create a routine that works for you.

  1. Write down everything you need to do in a month.
  2. Categorize tasks based on difficulty.
  3. Plan around patterns in your health and mood. When do you feel your best?
  4. Schedule the most essential tasks for the upcoming month, like picking up medication.
  5. Choose one or two smaller tasks each day based on importance, ease of completion, and how well you feel.

Try to be flexible, experiment with your schedule, and take frequent breaks between tasks. While it may be frustrating to stop in the middle, show yourself the same compassion you'd have for a loved one in a similar position. 

Take Charles, a kidney patient on dialysis: "There were so many toxins built up in my body and brain that it affected my thinking. I was not able to think or communicate properly. I was not able to do what I normally do." 

Dialysis helped Charles tremendously, but like many others with chronic kidney disease, he still experienced good and bad days. On those tough days, remember to rest and be proud that you're prioritizing yourself. 

2. Choose products and services that work for you

Person opening door to get groceries

When shopping, look for products that can help you achieve your goals, like Audra, a kidney transplant recipient. She loves cooking but struggled to do it as the kidney disease progressed. Instead of giving up on the hobby, Audra went on the hunt for tools to help her do it. 

"I've learned a lot of tricks and tips to help make cooking easier," said Audra. "I found these gadgets that do the work for me, like my tofu press. It's a game changer because I can actually squeeze all the juice out and fry it in my air fryer. I also found a great vegetable cutter, a sharp knife, and a food scoop so I don't have to pick up small pieces of chopped food." 

Tools and services to help make everyday tasks easier:

  • Grocery delivery app
  • Vegetable chopper and spiralizer
  • Grabber
  • Professional cleaning service
  • Countertop height chair and low rolling stool
  • Lightweight vacuum or robot vacuum
  • Lawn care maintenance service
  • Wheeled cart

3. Ask for help

Multigenerational family sitting happily together on a couch

You may run into things you can't do, and that's okay. Many friends and family want to help, so let them know how they can. Their assistance may give you the space to focus on your health, as it did for Jessica, a dialysis patient.

I couldn't do simple things like cook or open jars, and I couldn't even maneuver my vehicle or drive," Jessica said. "My lupus took over. It became very aggressive and attacked my kidneys because we didn't treat it quickly enough. Luckily, my family and my husband were always right there helping me so I could get better."

Five small ways your loved ones can help that have a big impact:

  1. Bringing over a kidney-friendly dish
  2. Helping you clean harder-to-reach areas
  3. Picking up medications
  4. Driving you to an appointment
  5. Holding space for your feelings

If you struggle to open up with the people closest to you, join NKF Peers. Our trained mentors know what it's like to live with kidney disease and can provide you with the support you need. 

Learn more about NKF Peers.

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