How will you feel after starting dialysis?

Each person may feel differently when they start dialysis. You might feel scared, overwhelmed, angry, or depressed. Emotions will usually shift over time as you adjust to dialysis. After they start dialysis, some people have more energy and feel like they think more clearly.

Other factors not directly related to dialysis treatment will impact your everyday life. Common for people on both HD and PD are: diet, finances, and the impact on your loved ones.

Diet

Dialysis can only remove a limited amount of wastes and water, so people on dialysis need to limit the amount of fluids they drink and specific types of food. Maintaining a healthy diet is very important.

Health Tip   Health Tip
 
  • Make sure to talk to your doctor and/or dietician about what foods are right for you.
 

Experiences & StoriesThe biggest thing is having to plan around my diet. For instance, I have to look closely at a product label when I'm shopping and make sure that there's not a high amount of phosphorus. And I have to watch the amount of fluid I drink. I was used to drinking a lot of water and diet soda, and I can't do that anymore, so it's an adjustment.

 

Finances

While many people are able to continue to work after they start dialysis, some may make less money or have changes in insurance if they reduce their working hours. People on dialysis may have expenses for doctor visits, tests, and medications. Costs depend on many factors, such as insurance coverage. This is very confusing. Your social worker can help answer questions about insurance and financial issues.

Health Tip   Health Tip
 
  • Talk with your social worker about a special type of Medicare that is available to people with kidney disease and additional co-insurance that will help you get the best coverage for your dialysis care.
 

Impact on loved ones

When you have kidney failure, life also changes for people who are close to you. From a practical standpoint, they may need to take you to medical appointments or to dialysis. They may need to take on more responsibilities around the house when you are feeling tired. Your partner may be affected if you are experiencing sexual problems.

Health Tip   Health Tip
 
  • Your social worker can help you with letters needed to excuse you or a family member from work when you have a medical appointment.
 

Emotionally, your loved ones will need to cope with the symptoms of kidney failure (for example, it may be difficult for you to concentrate or remember things). Loved ones may also be affected by the emotions you are going through.

Experiences & StoriesI feel guilty about the time and stress I cause. I sometimes feel like I should just stop dialysis so I can let my family live their lives. But I know my loved ones want me in their lives in any way - broken down, whatever. They wouldn't have it any other way.

 

Your social worker is available to talk with you and your family together regarding any concerns that come up and can make suggestions that might help both you and your family.

Your loved ones cannot read your mind. You need to tell them when you want help, and when you don't.

Experiences & StoriesWhen I learned that I had advanced kidney disease, my wife and family were all upset. They tried to give me advice and started to treat me like a sick person, trying to do everything for me. It was important for me to let them know that, since I started dialysis, I'm feeling stronger, and I want to get back to as much of a 'normal' life as possible. I made sure to let them know that I will ask for help when I need it.

 

What if I want to change my mind?

As your lifestyle and health change over time, you may change your mind about the type of dialysis that's right for you or how you do dialysis. For example, if you are on HD, you may want to change your day or time of dialysis. This is ok. Let your health care team know, and together, you will come up with the best plan.

Experiences & StoriesI started on HD originally because it was an emergency, and I was put on HD. Once I learned a little more about dialysis and got the hang of it, I decided I wanted to go on PD and do treatments at home. After being on PD for a while, I decided to go back to HD for a couple reasons. I'm a big guy, so the amount of dialysate fluid and supplies I was getting was a lot and started to get heavy for me to move around. I also have kids, and I didn't want my kids to see me doing dialysis, so I went back to in-center HD.

 

Sometimes, people may have to change the type of dialysis, as their current treatment may no longer be the best option for them.

Health Tip   Health Tip
 
  • It's important to voice your preferences along the way to your health care team to be sure that your dialysis is fitting into your life the best way possible.

Research described on this web site was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (1109). The statements and views presented here are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.