The news may have come unexpectedly or you may have known all along but had been putting off the inevitable as long as you possibly could, but now you are facing dialysis. However it came about, most often kidney failure is an illness that turns life upside down. The control you once may have felt is now gone, replaced by fear and concern about the treatment, life expectancy, your future, work, family roles, sexual desire, finances, etc., You ask the question, "why me?". Most patients experience some degree of sadness, anxiety and depression about the uncertain future and fear of the unknown.
Kidney failure has changed your life and taken you down a path you would never have chosen to travel. It has caused changes that are at best uncomfortable at worst painful. The pressures may seem overwhelming. In spite of all that has happened, your life is still in your control. What your life becomes is in your hands. You can fight against the illness or you can adapt. There are people who would never consider stepping into the ring with a championship fighter, yet they will fight dialysis, never considering that the fight is lost before it has begun. As they continue the fight against it, their quality of life declines and they lose hope.
What you can do:
- Embrace the changes in your life. Take Control! It has been said that "we fear what we don't know".
- Learn to understand your illness and your body's response to treatment, the effects of the treatments and medications you are prescribed.
- Actively participate in the treatment process. You are the most important member of the treatment team. By being involved, giving feedback, you help to guide the team in providing the highest quality of care to keep you healthy.
- Incorporate dialysis into your life, not your life into dialysis. A patient once said, "I now have a part time job doing dialysis".
- You have treatment choices. There are different forms of dialysis including home dialysis that may be more suitable to your lifestyle and give you more freedom. Talk with your doctor and treatment team to learn more about these options.
- Use all the tools at your disposal. You have had to make changes and adjustments in your life. You have likely experienced loss in your lifetime and survived. Take the tools that have worked well for you in coping with loss and change in your life and use them to adapt to the changes brought on by kidney failure.
- Take care of yourself. You are worth taking care of. When you take care of yourself you affirm your self worth. The better you feel the more hopeful you become.
- See yourself as a whole person. You are still you, not just "someone on dialysis". Your essential worth and value to yourself and others remains unchanged by kidney failure.
- Talk to the people you love and who care about you. Share your thoughts and feelings. You may not feel like talking to anyone. Do it anyway. Seeking support, asking questions can empower you to handle whatever comes your way.
- Seek out other patients with more experience on dialysis who can help you cope with the challenges you are facing.
- Talk with the members of the renal team. Share your concerns. The team members can offer you support. Counseling is available to you and your family and can be arranged by talking with your social worker.
- Talking out your fears, concerns and frustrations can help you to see them for what they really are and often lead you to solutions.
- Stay active. Talk with your doctor and start an exercise program if you can. Participate in activities you enjoy. Get involved. You can't do what you used to do? Do what you can.
- Set realistic goals. You can be discouraged by taking on too much and failing to reach your goal. Split up tasks into more manageable pieces to allow yourself to experience success.
- Exercise your faith. Spirituality, whatever form that takes in your life: prayer, meditation, church fellowship, etc., can be a great source of support. Patients have often said, "I don't worry about it anymore, I turn it over to the Lord every day".
- Find a Hobby. A hobby …
- Is a good way to keep the brain active and fight memory loss
- Can ward off depression and anxiety
- Can boost mental health
- Is a way to channel and exorcise much of the pain and hurt
- Volunteer.. This is a good way to focus on others rather than yourself. By helping others you help yourself.
You may be asking…
Do I have to go on Dialysis? Yes you do… if you want to live. Dialysis is a treatment of choice. It is not a cure. Talk with your doctor. Give it some time. It will take several treatments before you will know how dialysis will affect you.
- You can have dialysis for a trial period.
- You have the right to decline treatment if you are coping with multiple serious illnesses or have an overall poor quality of life and dialysis only serves to prolong your suffering.
- You have the right to stop dialysis if you feel it is not for you.
I sometimes feel sad, is that normal? Yes it is.
Periods of sadness or "having the blues" is part of the human experience. The thought of "being on the machine", being dependent on your family or health care providers for the first time in your life may result in those periods of feeling sad. With time, as you adjust to the treatment process and have a better understanding of your illness, these should diminish. However, if your sadness continues for a long time, it may be that you are feeling depressed. You should talk with your treatment team because depression is very treatable with the right kind of intervention.
Can I skip treatments? You should not.
There may be times when you just don't want to go to your treatment appointment. It is normal to feel like skipping treatment. After all, we have had that urge ever since grade school. Fight the urge! It is not advisable for you to skip treatments as there will be physical consequences which may include:
- Fluid overload with fluid in the lungs, difficulty breathing, etc,
- Cramping and low blood pressure the next treatment when extra fluid is being removed
- Cardiac complications including arrhythmias, cardiac arrest and death, due to high POTASSIUM levels
- Hospitalization due to medical complications
You may not immediately feel the consequences of missing treatments but missing treatments will likely shorten your life span. Talk with your treatment team if you are having difficulties. They can help you work through them. (www.therenalnetwork.org/resources/resources/missingdialysis1.pdf)
During my twenty years of working with patients starting dialysis, I have seen a wide range of responses. But what I heard from every patient once they started dialysis has remained consistent:
"It's not nearly as bad as I thought it would be".
Each patient will experience dialysis and life changes in a unique way. You will experience it your way. There is no right or wrong way to feel. It is not what is happening to you but how you respond to it that will make all of the difference in your life.
Take care of yourself. You deserve it.
Coping Effectively: A Guide to Living Well with Kidney Failure