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.
You can keep your life the way you know it. It's the advice my nurse gave me, Don't make your life fit your dialysis, make your dialysis fit into your life.
I'm gradually making friends and recognizing people, and people are talking to me, and other patients, staff members, so I've got a pretty upbeat attitude about life in general. You take a lemon, you make lemonade out of it, ya know? I like to crack jokes and make people laugh, and it works out well.
On dialysis, you have good days and you have bad days. It's an evolution more than anything else. You have to evolve your diet for you, there are times you feel full and uncomfortable, and times when you're more susceptible to infections. But I still exercise, and every year, I walk in the Kidney Walk for 3 miles. I still do many of the things I like to do. I've evolved to being on dialysis.
I look at my life in energy modules. I get really tired, and I have to limit what I can do. For example, I have an 8-year-old son. If I know he has a lacrosse game, I know I have to take it easy during the day so that I'll be able to rally to go and watch the game, participate in his life, and make dinner. So, I need to make sure I have enough modules for the things I need to do.
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.
The 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.
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.
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.
I 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.
When 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.
I 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.
This website was developed by patients, family members, and professionals who are committed to empowering people just like you facing the decision of what type of dialysis to start. We are a group of people with a wide range of backgrounds. Some of us are patients, just like you, and some of us are social workers, researchers, and doctors representing Arbor Research Collaborative for Health; the University of Michigan; and Greenfield Health Systems, a division of the Henry Ford Health System.
As a team, we have gathered information from over 180 people who are currently living with chronic kidney disease (CKD) or who are on hemodialysis (HD) or peritoneal dialysis (PD). The people who took part in our research provided helpful information, like what it feels like to be on dialysis on a daily basis, concerns of being on dialysis, quality of life on dialysis, and things they wish they would have known before starting dialysis.
It is our goal to give you the information you need to make a decision, as well as to share other patients’ experiences, to help you make the choice that’s best for you. Your role in this decision is very important, and we want you to feel comfortable being involved in the decision as much as you want.
Advanced Kidney Disease: A term sometimes used to describe kidney failure.
Automated Peritoneal Dialysis (APD): Peritoneal dialysis that uses a machine, called a cycler, to fill the belly with dialysate, and then drains dialysate and wastes out of the belly. Catheter (Hemodialysis): A plastic tube that is placed in the neck and is inserted into a large vein to take blood in and out of the body.
Catheter (Hemodialysis): A plastic tube that is placed in the neck and is inserted into a large vein to take blood in and out of the body.
Catheter (Peritoneal Dialysis): A plastic tube that is used to put dialysate fluid into the belly and to take the fluid, along with wastes, out of the body. One end is inserted under the skin into the belly (peritoneum), while the other end sticks out from the skin, usually below the belly button.
Chronic Kidney Disease (CKD): A long-term condition when the kidneys do not work properly.
Conservative Management: Supportive care for advanced chronic kidney disease that includes medications and diet restrictions without dialysis.
Continuous Ambulatory Peritoneal Dialysis (CAPD): Peritoneal dialysis in which the patient connects to bags of dialysate fluid and uses only gravity, not a machine, to fill the belly (peritoneum) with dialysate fluid, and drain the fluid along with wastes.
Creatinine: A product of muscle metabolism that is normally eliminated by the kidneys. Creatinine levels in the blood are used to estimate kidney function.
Cycler: A machine used during Automated Peritoneal Dialysis (APD) to put dialysate into the belly and drain the fluid, along with wastes, out of the belly.
Dialysate: A fluid used in dialysis to draw fluids and toxins out of the bloodstream and supply electrolytes and other chemicals.
Dialysis: A treatment that can remove waste and excess fluid from the body.
Dialysis Nurse: A trained medical professional who will assist in your care and dialysis treatment.
End-stage renal disease (ESRD): A condition in which the kidneys have stopped working. Also called kidney failure.
Fistula: An access site to the bloodstream used in hemodialysis to take blood out and put it back into the body; usually placed in the arm.
Glomerular Filtration Rate: A test that measures the function of kidneys. This is based on creatinine levels, age, weight, and sex.
Graft: An access site to the bloodstream used in hemodialysis to take blood out and put it back into the body; usually placed in the arm.
Hemodialysis: A type of dialysis that uses a machine to take blood out of the body, filter it, and put it back in; it is usually done at a specialized center.
Home Hemodialysis: Hemodialysis that is done at home, in which the patient provides his/her own treatment.
In-Center HD: Hemodialysis that is done in a specialized clinic, called a dialysis center.
Kidneys: Internal organs that clean the blood and produce urine.
Kidney Disease: A condition when the kidneys do not work properly.
Kidney Failure: A condition in which the kidneys have stopped working. Also called renal failure.
Kidney Transplant: A surgical operation in which a healthy kidney donated by another person is placed into the body of person with kidney failure.
Nephrologist: A doctor who works with people with kidney problems
Patient Care Technician (PCT): A health care worker trained to give care during hemodialysis treatments.
PD Exchange: The process in which sterile fluid called dialysate is put into and removed from the belly.
Peer Mentor: A kidney patient who has been trained to support other patients.
Peritoneal Dialysis (PD): A type of dialysis that uses the membrane that lines the inside of the belly (peritoneum) to purify the blood from wastes; it is usually done at home. There are two types of PD: Continuous Ambulatory Peritoneal Dialysis and Automated Peritoneal Dialysis (see definitions).
Peritoneum: Membrane that lines the inside of the belly.
Renal Failure: A condition in which the kidneys have stopped working. Also called kidney failure.
Social Worker: A trained professional who gives all levels of support, including educational and emotional, to patients before and after beginning dialysis.
Waste Products: Products of metabolism (urea, creatinine, uric acid), that are removed from the body by healthy kidneys.
Are you looking for more information about dialysis? You may want to visit these websites: