Many patients and families feel angry and scared when they need to start dialysis. Patients may feel angry that they got sick and they may feel like this should never have happened to them, and they may feel angry at their doctor and feel like it’s their doctor’s fault for making them start dialysis. Families may feel angry and guilty that their loved one needs to start dialysis, and they may feel helpless and feel like they could have done something to prevent their loved one from getting sick. People may also be scared about how dialysis and kidney disease will impact their daily lives, such as work, leisure, eating and traveling. In addition, people often feel like they have lost their independence, and that they are now dependent on doctors, nurses, and a dialysis machine to stay healthy.
It is perfectly normal to feel angry.
Kidney disease and dialysis have a significant impact on life, and it is natural to feel upset and nervous when dealing with such life-changing experiences. It is important to remember that dialysis is a life-saving treatment, and while it may take a while, you will start to feel better over time.
Patients and families often feel nervous and uncertain about the future.
Nervousness and uncertainty about the future may be in terms of their health, quality of life, and how long they will be able to live with kidney disease and dialysis. Often, patients and families experience anxiety from learning about dialysis and kidney disease, or from certain symptoms they are experiencing and feeling uncertain whether these symptoms are normal and expected. Sometimes, patients are simply nervous of being in a hospital and a new environment, and having to deal with nurses and doctors on a fairly regular basis. It is perfectly normal to feel anxious, because kidney disease and dialysis are highly stressful and difficult experiences. You can speak to your healthcare team, including your nephrologist and social worker, about your concerns and to discuss strategies to overcome your fear and anxieties.
Sometimes, patients and families experience depression during dialysis initiation. Dialysis can seem like a shock, and people often feel as if their lives have been turned upside down.
People often question their own self-worth.
They may feel like they are less valuable to society as a sick dialysis patient. This can lead to feelings of depression, and feeling like life will never be the same and that life no longer has purpose. Most people overcome these feelings over time – as patients and families become more comfortable with dialysis and as their health becomes more stable, they feel like they are able to return to normal as much as possible, and dialysis just becomes part of their daily routine. Sometimes, these depressive feelings can last longer than normal, and it is important to talk with your healthcare team if you simply feel like you aren’t able to emotionally or physically recover from starting dialysis. For more information about depression and kidney disease, click here.
People who are being trained to perform their own dialysis at home often experience fear during their home dialysis training. Patients, and their families, on home dialysis sometimes fear being alone and not having the direct care of nurses, not knowing what to do if something goes wrong at home. They fear inserting the dialysis needles without supervision, and making a mistake or forgetting what to do. Home dialysis training can be overwhelming at times.
The more anxious you are the more difficult it seems to remember all the steps.
The nurses who train patients and their families know this and teach the treatment steps as slowly as necessary. Patients are never sent home until the nurses, nephrologists, patients and their families are completely confident that the patient will be able to manage independently. In addition, patients who are on home dialysis are given the phone numbers of the nurses and nephrologists that are reachable 24 hours a day, 7 days a week, so patients and families will never feel like they are alone – there will always be someone who can help!
Above image by Judit Klein. Licensed under CC BY-ND 2.0