Your doctor just said your kidneys are failing and that you are going to need hemodialysis. You are told you have Chronic Kidney Disease or End Stage Renal Disease. A million questions and worries are racing through your mind. You are angry and sad and overwhelmed. Nobody seems to be listening to your concerns. Everyone assumes that of course you will want to participate in this life sustaining treatment. Stop. Take a breath. Take time to learn about the process and your choices.
You are starting a journey. Take a moment and let yourself feel all the emotions you are experiencing. It is ok to be overwhelmed. Get support from family and friends. Start to learn about kidney disease and the process of dialysis.
Initially, you will be bombarded with information. You will hear words like “nephrologist”, “fistula”,” creatinine”, “clearances”,” phosphorus”,” kt/v”, among many others. As a dialysis social worker, I tell people that they shouldn’t expect to remember all the information thrown at them when they start the process. It seems as if the first 6 months can be very much a blur. Eventually you will learn all the terms and what they mean. Often your center will give you a welcome packet or other written material. At the onset of dialysis you are provided with so much information that you be overwhelmed. Instead of tossing the written information in the back seat of your car or in the wastebasket, it may be helpful to save the information and you will have it readily available later on when you have questions or want to refresh your knowledge.
Do you remember the Kubler-Ross’s stages of grief (Denial, Anger, Bargaining, Depression, Acceptance)? It is likely that you will go through similar stages after learning about needing to be on dialysis. Dialysis is phenomenal in that it gives you a chance to live where otherwise you may not have the opportunity. However, you still will be giving up some independence and there will be necessary lifestyle changes. Give yourself time to grieve and incorporate dialysis into your life.
Try not to be intimidated by the professionals involved with your care – ask questions and express your concerns. Talk to your doctors. Talk to your family and friends. Talk to your social worker, nurses, techs and dietitians. It is vitally important that you look out for yourself and meet your health needs.
A few things for you to keep in mind while starting your journey.
· You may not feel better right away. Dialysis will clean the toxins out of your blood and take off some of the excess fluid in your body. There may be some relief very quickly but you may not feel like a new person overnight. Give it a little time and you will likely feel better.
· There are different home dialysis options including home hemodialysis and peritoneal dialysis. If this may be of interest to you, ask your doctor to provide you information and assess if home dialysis is an appropriate modality for you.
· You will probably feel very tired as you get used to dialysis. You might hear that all you are doing is spending 3 or 4 hours in a chair. Family and friends might indicate that all you are doing is sitting and resting so you shouldn’t be tired. Remember, your body is working the entire time you are in treatment. For some people they become less exhausted as their body adjusts to treatment and some continue to struggle with exhaustion on dialysis days.
· If you are of working age it may be tempting to continue time off work. Carefully consider trying to keep working at least part time if you are able. Individuals on dialysis may feel better, have less depression and will probably have more financial freedom when they are employed.
· Dialysis is costly. If you have a work history and have been paying into social security it is likely you will qualify for Renal Medicare. Even if you have group insurance coverage it is probably beneficial to you to also obtain Medicare Part B which helps pay for outpatient medical services. Talk to your dialysis social worker about any and all financial assistance you may qualify for.
· If you are starting dialysis and already have a fistula as your dialysis port, be aware there are prescription numbing creams to minimize pain when the health professional is inserting a needle.
· There is generally never more than a soda can size amount of blood outside of your body at any given time.
· If you are considering a transplant you will want to make connecting with a transplant center a priority.
· Learn about and complete advanced directives (health care power of attorney). Often individuals balk at this step but get the information. Consider that if you are unable to speak for yourself that you will have wanted to take the steps to make sure that you have chosen who speaks for you.
· You can still travel. Do you want to visit your grandkids or go on that dream trip to Hawaii? Most of your travel plans are still possible. Except in real emergencies you may not be able to get up and go at the last minute on a cross country trek but there are dialysis centers everywhere and with a little planning they are available for you.
· You have the choice to not start or to discontinue dialysis. This is your life. An individual may choose to discontinue dialysis for a myriad of reasons. If your doctor is recommending dialysis and you are a new patient, I would advise that you at least try dialysis. Give it 30 or so days and see how you feel. You might see that you are able to adjust better than you imagine and you may feel a lot better. If you are thinking about discontinuing dialysis please talk with the professionals and your support system. Your center’s social worker will want to complete a depression screening to see if there are other interventions that may be available to you and improve your positive feelings. If you decide to discontinue treatment it may be beneficial to get hospice or other services involved to help you and your family and friends through the transition and the dying process.
Above are just a few thoughts on dialysis. Ultimately it is your life and it is imperative you speak up and gather all the information you can in order to make good decisions for yourself. Dialysis can be draining and frustrating but it also gives you the opportunity to live a very full and active life. It takes time but dialysis can become just another part of a fulfilling life.
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