Living with Stage 4 Chronic Kidney Disease

Knowing the members your healthcare team

Good healthcare is always a team effort - especially for people with CKD. Since each member of the healthcare staff contributes to your care, it is important for you and your family to build a good working relationship with them. The healthcare team will probably include:

• Nephrologist (Doctor): The team leaders in many medical facilities are doctors called nephrologists - or, to use an easier term, "kidney doctors." Nephrologists are doctors who have advanced training in treating kidney disease. They are responsible for medical care during dialysis treatments. Nephrologists also may be responsible for patient care before and after a kidney transplant.

• Advanced Practitioner: Your team may also include advanced practitioners. Nurse practitioners (NP) and Physician Assistants (PA) collaborate with the doctors in caring for kidney patients both in medical offices or in the dialysis unit.

• Nephrology Nurse: Nephrology nurses are licensed, registered nurses who have specialized experience in the care of patients with chronic kidney failure. Nephrology nurses coordinate patient care with the other team members. Some of them may be qualified to train patients to do home dialysis.

• Renal Nutritionist (Dietitian): Renal dietitians have specialized degrees in dietetics and must be registered. They know what foods are right for kidney patients, and they can help you plan your meals. Following a diet is an important part of patient care, both before and after starting dialysis or after transplantation.

• Nephrology Social Worker: Nephrology social workers provide counseling to help patients and their families cope with kidney disease and changes in the family, home, workplace and community. They identify sources of emotional support for patients who need it. They also identify services within federal, state and community agencies to meet patients' needs and help patients and families access services when necessary.

• The Patient: You and your family are the most important members of the healthcare team. You can take an active role in your care by learning all you can and cooperating fully with your treatment plan. At first, you may be somewhat overwhelmed by your illness and by all the new names and faces. However, you and your family should not be afraid to ask questions. Each and every person on the healthcare team is there to help you feel your best.

If you become a candidate for a kidney transplant, your health care team will also include a transplant surgeon, who will perform the actual transplant operation and answer any questions you may have about the surgery or about the follow-up care. They will also take care of your follow-up care after the operation. A clinical transplant coordinator is the patient's link to the transplant hospital. Many are licensed, registered nurses or physician's assistants who have specialized experience in the care of kidney transplant recipients. Clinical transplant coordinators assist patients with all the details of care involved in preparing for transplantation, and also serve as information resources for patients and families after the transplant.

Dialysis facilities may also have patient care technicians. They are often the health care team members who are most directly involved with the patient's dialysis treatment. In many dialysis units, they are responsible for starting and ending each treatment and for monitoring patients before, during and after treatments.

Communicating with your healthcare team

How well you and your healthcare team talk to each other is important. It’s part of your healthcare. Ask questions if the explanations or instructions are unclear. Mention any problems you are having, even if your clinician doesn’t ask. Let your healthcare team know if you have concerns about a treatment or change in your daily life. Taking an active role in your healthcare will help you feel more in control. You and your healthcare team will need to work together to make treatment choices that are best for you.

Sharing information between you and your healthcare team is important to make sure you and your clinicians have all the information they need to develop a plan of care that works best for you, and update them when needed. Ways to share information can include the following:

• Update your clinician. Tell members of your healthcare team what has happened since your last visit. Let them know about any new symptoms or changes in your appetite, weight, sleep, or in the medications you take.

• Describe any symptoms. A symptom is something you feel like pain or dizziness. Information about your symptoms along with findings from a physical exam and medical tests will help make a diagnosis. Give the clinician a brief description of the symptom, when it started, how often it happens, and if it is getting worse or better.

• Take notes. Or get a friend or family member to take notes for you.

• Ask your clinician to write down instructions for you. Ask for printed materials about your condition or suggestions for where you can get more information.

Preparing for appointments

Before you arrive at your appointment, have a basic plan that you’ve thought about beforehand. Here are some tips to help:

• Write down your questions. Put your questions in order so you’re sure to ask about the most important ones first.

• Keep a list of all the medications you are taking. Tell your clinician about any over-the-counter medicines you have been taking.

• Let your healthcare team know about any new symptoms you have been feeling.

• Ask a family member or friend to come with you. They can remind you what you planned to discuss in case you forget, and can help you remember what the clinician said.

Self-management: What Can I do to manage my health?

Your healthcare team will work closely with you to help manage your CKD. They can provide you with information and teach you about CKD care. They will also give you check ups and give treatment. However, much of your day-to-day care of is up to you. This is when self-management, or self-care, becomes an important part of your healthcare. You can make choices that will have a positive effect on your health. Some things you can do to help manage your health include the following:

• Make healthy food choices

• Decide to be more physically active

• Take your medications as prescribed

• Ask about monitoring blood pressure at home, especially if you have high blood pressure

• Ask about monitoring blood sugar at home, especially if you have diabetes

• Keep a log book of your treatments, lab results, appointments, or any other information about your health. You can take the book along to your appointments so you can discuss changes or new instructions with your healthcare team

• Watch for symptoms or changes in your health. Report any sudden changes in symptoms to your healthcare team

• Talk with your healthcare team if you feel overwhelmed or unable to manage one or more aspects of your management. Ask questions when you are not sure about something

• Ask friends or loved ones for help

• Talk with others who are living with kidney disease. They can understand your situation in a special way and give you support

• Stay informed, take charge of your health, and always be an active member of your healthcare team