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How do I get engaged as a kidney patient?

October 3, 2021

It is necessary to integrate the patient’s point of view in the health outcome and the measures of satisfaction. Only then patient engagement is full. Patient engagement in health care consists of the actions they take to benefit from that care. It is no longer the case in modern medicine that patients can passively receive health care and assume that this will produce the best result and optimal impact.

 

There are certain things you can do if you have kidney disease to affect your health outcome. You can participate actively in finding good care and making it work for you. For example, you may seek out the right doctors you can connect with and the right hospitals to care for you. You can learn as much as you can about kidney disease by just being curious and ask questions and read about your ailment. You can share your symptoms effectively with your doctors and nurses. When needed, you may make and keep appointments, organize your health records, and direct them to different healthcare providers that care for you, so everyone is on the same page.  You can make informed decisions about your treatment in partnership with your doctors and nurses.  Once a satisfactory treatment plan is agreed upon, follow it step by step and keep track, sometimes for weeks, sometimes for months, and sometimes for the rest of your life.

 

Blood pressure that is high all the time can worsen kidney damage and increase the risk of heart attacks, strokes, and even death. Pay attention to your blood pressure as high blood pressure may not give you any warning signs. Buy a blood pressure machine. Check your blood pressure at home, keep a log of the readings and bring it to your appointment for reviews. Call if your blood pressure remains higher than the target (usually > 130/80) persistently. Your doctor can choose the right medications for you if he/she knows your blood pressure trend. Keep in touch with your team. To protect your kidneys your doctor may choose ACE inhibitors (for instance lisinopril, or enalapril) or ARBs (for instance losartan, or valsartan). These medications also help to reduce protein in the urine and can help lower your blood pressure and your risk for heart disease and stroke. Not everyone can tolerate an ACE inhibitors or ARBs. Share the side effects with your team.

 

If you are also a diabetic with kidney disease, controlling A1C to the target that your medical team sets, is important. A1C is a blood test that indicates the average blood sugars for the past two to three months. For diabetics, controlling your blood sugar greatly decreases the damage to the kidneys and other vital organs like the eyes, nerves, and blood vessels. Ask your doctor how to best achieve this A1C goal. You may need to control your cholesterol. Eating a low fat, low cholesterol diet and taking Statin medication (for example atorvastatin, or simvastatin) helps lower your bad cholesterol or LDL and protect your blood vessels from getting plugged by plaques. This not only can protect your kidneys but also your heart and circulation. The best diet for you is the one that helps you maintain a healthy weight, controls your diabetes, and is low in salt and fat. Some people with chronic kidney disease may need to limit their protein intake, in addition to phosphorus and possibly potassium. You may benefit from seeing a dietitian that can help you achieve these goals.

 

Exercise at least 20 minutes several times per week. Set a regular schedule of exercise for yourself. Exercise has many benefits. Science has shown that exercise not only reduces blood pressure, improves diabetes control, and fights depression, but also helps with weight loss, improves muscle and bone strength, flexibility, and balance. It gives you more stamina as you get older.

 

There are some medications and herbal products that may damage the kidneys. Avoid over the counter pain medications that include NSAIDS (non-steroidal anti- inflammatory drugs), such as ibuprofen (Motrin, Advil), naproxen (Aleve) as much as possible. Certain Chinese herbs can cause kidney damage. Also notify anyone that tries to give you x-ray dye or contrast that you have kidney disease, and they must take the right precautions.

 

When you get to later stages of kidney disease, learn all about kidney transplant option. Sign up for a kidney transplant at one of the local transplant clinics. Seek out any family members or friends that may be willing to donate you a kidney.  Get them tested to see if they match your blood type and if not seek the possibility of shared donation.

 

Because you have kidney disease, you must do what you can to prevent illness, through the way you live, through your diet and exercise, and through your use of vaccines and screening tests. Seek the best care available to you through your providers.

 

Many factors influence your ability to engage in your care. Some of them have to do with your personal characteristics. You might be ill already, or you may live alone or not have the resources everyone else has. You might not know that you must do these things, or you might not know how to do them. The healthcare itself, doesn't always welcome your engagement. Some doctors aren't interested in it. There isn't much useful information about the quality and price of doctors and services to guide your choices. Every clinic and hospital have different systems and rules that they often forget to tell you what they are. Health care is very expensive and sometimes you can’t afford it and so on.

 

Today, only about 1/3 of people feel confident that they are involved in their own health. The rest of people are kind of uncertain, reluctant, unable, or unwilling to join in. As individuals you have the biggest investment in your care. You may suffer unnecessarily if you can’t or unwilling to engage. Other providers, hospitals, health plans and the government also have a stake in your engagement, not only because it affects your health outcomes but also because of the wasted results when you don't participate. Your engagement in your health care is not just a nice thing to do, it's critically necessary.



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