facing kidney disease
knowledge is power
Being diagnosed with chronic kidney disease (CKD) can be a trying and difficult experience - for patients and for their families and loved ones. But information can go a long way towards helping gain control of the situation. A patient who knows what's coming up, what to watch out for, and what treatment options are available if their kidneys fail can make educated decisions about his or her own healthcare.
As challenging as a chronic kidney disease diagnosis is, it is important to take action quickly, put a treatment plan into place, and begin to actively manage your health.
Consider the below actions and steps as you begin to construct your plan. Please note: many of the action items include links for more information, and will take you to our national office's Kidney A - Z Health Guide.
Understand the disease
The National Kidney Foundation (Our national headquarters, in New York).
Record your questions in a notebook or in your phone/table/computer, and bring it with you to all doctors appointments. Use it to keep track of test results and appointment dates. Write down the contact numbers of all your doctors in one place or save them in your cell phone. Additionally, know the number to call if you have a problem/concern after hours or on a weekend
Work with your doctor, and follow medical advice
Kidney disease doesn’t always lead to kidney failure. Your doctor may tell you to take medicine or make changes to your diet and lifestyle. This can help keep your kidneys healthier longer, or even stop your kidney damage from getting worse. Working together, you may be able to keep your kidneys healthy enough to avoid needing dialysis or a transplant. Your relationship with your physician is a partnership for your health, so be prepared to take an active role.
Plan to see specialists
A Nephrologist. A doctor who specializes in kidney health.
A Clinical Dietitian. A specialist who designs nutrition programs to improve or maintain the health of patients.
Transplant Physician. A doctor with advanced training in an area of medicine (e.g., heart, kidney or liver specialists).
Transplant Surgeon. Doctors with advanced training in surgery.
Transplant Pharmacist. A specially trained pharmacist who will assit you with oost-transplant medication.
Stick to the diet
Get your blood pressure checked
Understand your blood work
ACR (Albumin to Creatinine Ratio). ACR is a urine test to see how much albumin (a type of protein) is in your urine. Too much albumin in your urine is an early sign of kidney damage.
GFR (glomerular filtration rate). GFR is a measure of kidney function and is performed through a blood test. Your GFR will determine what stage of kidney disease you have (there are 5 stages).
Ask for help
Advocate for yourself
Make necessary lifestyle changes
Be active, get exercise
Learn about treatment options for kidney failure
Control what you can
Your attitude can be everything. Keeping positive, even if you’re not feeling well, may make a big difference in your well-being. Many people find strength in faith while others simply continue to do things they love (painting, playing music, seeing movies!). It is entirely possible for you to live a healthy and happy life with kidney disease. It just takes you being an active participant in your own health care team.
your doctors and you
Some people find talking to a doctor intimidating, and are afraid to ask questions, get information clarified, or ask for additional options. But being comfortable talking with your medical team is crucial to your healthcare.
It is always okay to ask questions if the explanations or instructions are unclear. Mention any problems you are having, even if your healthcare provider 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.
The following questions and actions may be helpful for you to consider in advance of your next doctor visit.
communicating with your healthcare team
NKFI kidney health resources
The information shared on this website has been reviewed by staff at the New York City headquarters of the National Kidney Foundation. Please note: material contained here are intended solely for reference. This material does not constitute medical advice; it is intended for informational purposes only. If you feel you need professional medical care, please consult a physician for specific treatment recommendations.