A diagnosis of kidney disease often comes as a shock, but you don’t have to face it alone. Our Facebook community includes thousands of people who are living with kidney disease or kidney failure. We recently asked what advice they would give someone who is newly diagnosed.
If you are new to kidney disease, take some great advice from people who have been there . . . and “Like” our Facebook page to join an active and caring community of patients, family members, friends, and caregivers who share information about living with kidney disease and encourage one another to stay strong in the fight.
1. Educate yourself.
Knowledge is power, and it can help overcome feelings of helplessness in the face of kidney disease. “Be proactive and learn everything you can about your disease,” says Ann. Countless others agree. “Educate yourself and then make sure those who are your support system educate themselves, too,” says Linda.
While a lot of information about kidney disease is available on the Internet, it is not always accurate. Turn to websites you can trust, like the American Kidney Fund (KidneyFund.org) and the U.S. government.
2. Follow your doctor’s orders.
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. “Do whatever your doc says to do so it doesn’t progress to where you need dialysis,” says Michele. “Comply with doctor’s orders, get exercise and eat right, and take your medications correctly,” says Beth.
Your relationship with your health care provider is a partnership for your health, so be prepared to take an active role. The AKF website has tips for working with your doctor to say healthy.
3. 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.
“Eat the diet best for your diagnosis,” says Linda. “Be mindful of everything you put in your mouth and how it will affect your kidneys,” adds Crystal.
Nadir says he was diagnosed with stage 3 CKD in 2004 and has been successful in keeping it from getting worse. “Watching what you eat and drink helps tremendously,” he says.
A renal dietitian can help you plan the diet that is best for you. You can also find helpful information about the kidney-friendly diet for CKD on the AKF website.
4. 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,” says Linda.
You can use AKF’s free Kidney Health Tracker to help you keep track of your kidney health test results.
“Get familiar with your blood work values and know what they mean,” recommends Beth. “Call your doctor after every blood draw to learn results and ask how you should adjust diet or medications.”
5. Ask for help.
Don’t try to go it alone! “Have a great support team behind you and keep fighting,” says Lisa. Others say you will have good days and bad days, and it’s important to lean on your support network. “Accept help when you are run down,” says Jessica. “Allow your loved ones to be involved and help you when you need it,” says Tonya. “Stay strong and get support from friends and family,” says Lisa.
Many patients acknowledge the need for emotional support, as well. “When you get angry or just plain depressed, please talk to somebody,” says Debbie. Todd’s advice: “Find a local support group. If you do not have one, join this page and others. The people who walk in your shoes daily offer support and advice that doctors cannot always give!”
6. 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. “You will learn that nobody knows your body better than you, not even your doctor,” says Brenna. “If something doesn’t feel right, look into it.”
“Don’t be afraid to ask questions and speak up when something is wrong or unclear,” says Julia. “No question is stupid,” notes Nancy. “Know all of your options and ask questions.”
7. Stay active.
Many patients say that being active helps them feel better. “Stay active,” says Leslie. “Find things you enjoy doing that keep you moving each day and get an adequate amount of sleep each night.”
It’s important to ask your doctor about exercise before you begin any new routine. Recognizing that kidney disease and heart disease often come together, Mollyn says, “Moving forward, your main focus needs to be keeping your HEART healthy.”
8. 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.
“Start planning to get on the transplant list as early as possible to have less waiting time and dialysis,” says Beckie. “Try to stay healthy until you get your transplant so you will be ready.”
You can learn more about the treatment options for kidney failure on our website.
9. Stay positive.
“Attitude is everything!” says Mayra. She and many others know from experience that keeping a positive attitude, even if you’re not feeling well, is what keeps you going. Many find strength in faith while others simply continue to do things they love. “Positive feelings through music,” says Ben. “Listen to reggae, paint, create something beautiful!” According to Tonya, “Keeping a journal could help with emotional stress.”
Mollyn offers words of encouragement: “You can live a healthy and happy life with kidney disease. It just takes you being an active participant in your own health care team.”