Common Mistakes Kidney Patients Make & How to Avoid Them, Part 1: Ignoring Your Numbers

By Risa Simon

Everyone makes mistakes. I’ve certainly made my share. I guess the upside of making a mistake is the powerful lesson that follows. Of course, the learning only sinks in when the memory of error lingers longer than the mistake itself.

Wouldn’t it be great to avoid all those unforeseen blunders long before they throw you into a tailspin of reactive, uninformed decision-making? While you can’t control everything in your life, at the very least, you could influence the best outcome by being more prepared for the unpredictable.

Over the next few weeks, you will find some golden nuggets to help you avoid the five most common CKD landmines by becoming your own best advocate. Incorporate these proactive behaviors and you’ll soon be on your way to becoming a more empowered patient in pursuit of your best life possible.  The life every CKD patient deserves.

Mistake #1: Ignoring Your Numbers 

Are you monitoring your blood pressure, weight and lab results closely, or are you relying on your doctors to translate all that fuzzy math? Don’t assume that you’re being told everything you need to know.  Take some responsibility. Your numbers play a significant role in the progression of your disease and can alert you to a problem that you might be able to reverse before it gets worse. Of course, easier said than done if you don’t get a copy of your results after each draw.

To keep yourself well informed and proactively involved in your health, step-up your game a notch or two by following these patient self-advocacy tips:

  1. Set your digital calendar to sound an alarm or send you a message when it’s time to check your BP and weight, or get down to the lab.
  2. Keep a spreadsheet for tracking your blood pressure and weight by date.
  3. Keep an observation diary for tracking new and unusual symptoms that might be associated with fluctuations in areas such as blood pressure or weight.
  4. Insist on getting a copy* of your lab results faxed to you at the same time your doctor’s office receives them. This way you can review them and prepare your questions in advance. (*Your doctor will need to indicate this “CC” request on EACH lab order. Do not leave the office until this request has been confirmed. There’s nothing more frustrating than arguing with a lab about your right to obtain your results).
  5. Create a spreadsheet for your lab values as well. This will allow you to plot your numbers by date for visual comparison trends. Being organized will also allow you to more efficiently formulate your questions at each visit.

While your labs can look like Greek to you, do not be intimidated. Keep your eagle eyes on these numbers at all times.

(1) eGFR (this is an estimated number that shows how efficiently your kidneys are sifting, sorting and cleaning waste from your blood).

(2) Creatinine (the measurement that gauges your kidney’s ability to breakdown muscle cell waste).

(3) BUN (the amount of protein in your blood and urine)

Of course, paying attention to all your numbers, including electrolytes like potassium, blood cell counts like hemoglobin and hematocrit, and monitoring calcium, phosphate and lipids, is also very important. Of course, watching for blood or protein in the urine must not be overlooked either. Follow these tips to more effectively partner with your healthcare team as you become your own best advocate. Information is power.

Check back next week for part 2 in our new series!

About Risa Simon: As a motivational speaker, 3x published author, patient educator and Peer Mentor for the National Kidney Foundation, Risa has one goal: To empower kidney patients to become their own best advocate. Risa is the founder of Simon Says Seminars, Inc., The Proactive Path and KidneyKinships.org. She also runs the Phoenix Chapter of the Polycystic Kidney Disease Foundation while serving on prestigious renal organization advisory committees. Known as the kidney patient’s patient advocate, she followed the proactive systems she created for herself and others, and is now living her best life ever. This is what she wants for all transplant eligible patients. Her tips, scripts and Donor Magnet® system can be found in her book: Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients. For more information visit: www.shiftyourfate.com

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