For Patients & Families: Recently Diagnosed

recently diagnosed

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 notemany 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


For many patients, learning the ins and outs of kidney disease and can be very empowering. By becoming fluent in their condition, patinets often find they better graps their options, and many are able to move past feelings of helplessness. When learning about kidney disease, first and foremost, make sure you thoroughly understand what stage of chronic kidney disease you have. Knowing the stage of CKD you face (and learning about any possible related conditions you may also be diagnosed with) can seriously impact your treatment plan. Be proactive, learn everything you can about your disease, and try and help your support system educate themselves as well. Keep in mind: while a lot of information about kidney disease is available on the Internet, it is not always accurate. Be sure to turn to websites that are trustworthy, like

For a larger list of online resources, click here.




Get Organized


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


In addition to your primary care provider, you will likely plan treatment with:

  • 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.
If you plan on seeking a kidney transplant, you will also likely work with:
  • 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


When you have chronic kidney disease (CKD), following a kidney-friendly diet is important to keep you healthy and help protect your kidneys from further damage. A kidney-friendly diet limits certain foods to prevent the minerals in those foods from building up in your body. Watching what you eat and drink will help you stay healthier.




Get your blood pressure checked


Blood pressure checks are important since high blood pressure can damage the kidneys. Know what numbers are considered acceptable for your condition and work with your health care professionals to take steps that will keep you in that range.




Understand your blood work


When you have CKD, numbers become very important because they are used to gauge whether your disease is stable or getting worse. Your health care provider will test your blood and urine regularly, and will monitor your blood sugar (if you have diabetes) and blood pressure. Know what the lab numbers mean, as those numbers can help gauge where you are medically.

Your kidney numbers include 2 tests:

  • 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


Don’t try to go it alone! Work to build a great support team behind you and keep fighting. You may have good days and bad days, and it’s important to lean on your support network. Accept help when you are run down, and allow your loved ones to be involved and help you when you need it. Many patients acknowledge the need for emotional support, as well, and find in-person and/or online support groups helpful.




Advocate for yourself


Advocating for yourself means making sure you are getting the care you need. Speaking up and asking questions are part of advocating for yourself. 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 provider know if you have concerns about a treatment or change in your daily life. No concern or question is stupid, and it is always work a conversation.




Make necessary lifestyle changes


In addition to causing lung cancer and lung disease, smoking is also associated with kidney disease, kidney cancer and bladder cancer. Smoking slows the blood flow to vital organs like the kidneys, causing damage. Think of smoking as stepping on the accelerator for any disease that you may have. So if you have kidney disease, smoking can make it even worse.




Be active, get exercise


Many patients say that being active helps them feel better, but along with a kidney-friendly diet, smart physical activity can go a long way to improving your kidneys’ health, and to ensuring your heart remains healthy as well. Remember, it’s important to ask your doctor about exercise before you begin any new routine




Plan ahead


Even with the best medical care, some people who have CKD will eventually have to face living with kidney failure. Learning about the treatment options for kidney failure and preparing for dialysis and/or a transplant can help you to make the best decisions for yourself if your kidney disease progresses. Consider planning to get on the transplant list as early as possible to have less waiting time, and less dialysis.




Learn about treatment options for kidney failure


If you’re newly diagnosed and already in the late stages of kidney disease (stage 4 or 5), ask your kidney doctor or advanced practitioner about the different types of treatment options for kidney failure so you can choose the one that best suits your health and lifestyle. Options include:

There are different types of dialysis treatments to learn about as well including:




Control what you can


Closely monitor your nutrition, physical activity and pain level and provide feedback to your healthcare team. Consider utilizing integrative medicine such as massage therapy, yoga, meditation, acupuncture and pet therapy.




Stay positive


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.





 

LEARN ABOUT LIVING WITH KIDNEY DISEASE

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

 

Understand the disease


For many patients, learning the ins and outs of kidney disease and can be very empowering. By becoming fluent in their condition, patinets often find they better graps their options, and many are able to move past feelings of helplessness. When learning about kidney disease, first and foremost, make sure you thoroughly understand what stage of chronic kidney disease you have. Knowing the stage of CKD you face (and learning about any possible related conditions you may also be diagnosed with) can seriously impact your treatment plan. Be proactive, learn everything you can about your disease, and try and help your support system educate themselves as well. Keep in mind: while a lot of information about kidney disease is available on the Internet, it is not always accurate. Be sure to turn to websites that are trustworthy, like

For a larger list of online resources, click here.




Get Organized


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


In addition to your primary care provider, you will likely plan treatment with:

  • 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.
If you plan on seeking a kidney transplant, you will also likely work with:
  • 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


When you have chronic kidney disease (CKD), following a kidney-friendly diet is important to keep you healthy and help protect your kidneys from further damage. A kidney-friendly diet limits certain foods to prevent the minerals in those foods from building up in your body. Watching what you eat and drink will help you stay healthier.




Get your blood pressure checked


Blood pressure checks are important since high blood pressure can damage the kidneys. Know what numbers are considered acceptable for your condition and work with your health care professionals to take steps that will keep you in that range.




Understand your blood work


When you have CKD, numbers become very important because they are used to gauge whether your disease is stable or getting worse. Your health care provider will test your blood and urine regularly, and will monitor your blood sugar (if you have diabetes) and blood pressure. Know what the lab numbers mean, as those numbers can help gauge where you are medically.

Your kidney numbers include 2 tests:

  • 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


Don’t try to go it alone! Work to build a great support team behind you and keep fighting. You may have good days and bad days, and it’s important to lean on your support network. Accept help when you are run down, and allow your loved ones to be involved and help you when you need it. Many patients acknowledge the need for emotional support, as well, and find in-person and/or online support groups helpful.




Advocate for yourself


Advocating for yourself means making sure you are getting the care you need. Speaking up and asking questions are part of advocating for yourself. 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 provider know if you have concerns about a treatment or change in your daily life. No concern or question is stupid, and it is always work a conversation.




Make necessary lifestyle changes


In addition to causing lung cancer and lung disease, smoking is also associated with kidney disease, kidney cancer and bladder cancer. Smoking slows the blood flow to vital organs like the kidneys, causing damage. Think of smoking as stepping on the accelerator for any disease that you may have. So if you have kidney disease, smoking can make it even worse.




Be active, get exercise


Many patients say that being active helps them feel better, but along with a kidney-friendly diet, smart physical activity can go a long way to improving your kidneys’ health, and to ensuring your heart remains healthy as well. Remember, it’s important to ask your doctor about exercise before you begin any new routine




Plan ahead


Even with the best medical care, some people who have CKD will eventually have to face living with kidney failure. Learning about the treatment options for kidney failure and preparing for dialysis and/or a transplant can help you to make the best decisions for yourself if your kidney disease progresses. Consider planning to get on the transplant list as early as possible to have less waiting time, and less dialysis.




Learn about treatment options for kidney failure


If you’re newly diagnosed and already in the late stages of kidney disease (stage 4 or 5), ask your kidney doctor or advanced practitioner about the different types of treatment options for kidney failure so you can choose the one that best suits your health and lifestyle. Options include:

There are different types of dialysis treatments to learn about as well including:




Control what you can


Closely monitor your nutrition, physical activity and pain level and provide feedback to your healthcare team. Consider utilizing integrative medicine such as massage therapy, yoga, meditation, acupuncture and pet therapy.




Stay positive


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.





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.

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