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, like your kidney disease that appears to have the upper hand in this game, you could influence the outcome by being more prepared for all those unpredictable circumstances.

Below you find some golden nuggets to help you avoid the 5 most common kidney patient landmines. 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 kidney 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 those hard to pronounce words and jumbled corresponding values? Don’t assume you’re being told everything you need to know. As the CEO of your health, take responsibility by asking key questions and encouraging a dialogue about your numbers. Your lab values play a significant role in the progression of your disease. They also alert you to potential problems that you might otherwise not be aware of . Early insight can often increase your odds to correct potential problems.

To keep yourself well informed and proactively involved in your health— Step-Up your game a notch by following these tips:

1. Set your digital calendar to be proactive by scheduling your lab draws at your recommended intervals.
2. Keep an “observation diary” for tracking new and unusual symptoms (like fluctuations in BP or weight).
3. Insist on getting a copy of your lab results in your portal (as soon as they are available). This will allow you to be “one step ahead” of conversations about any changes in your lab values.
4. If your portal is unable to show a history of your lab values, create a spreadsheet on your own. This will allow you to plot/visualize your numbers by date, and track the history of potential problems.

While your labs can look and sound like Greek, keep your eagle eyes on these key 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. Watching for blood or protein in the urine must not be overlooked either. Follow these tips to more effectively partner with your healthcare team to become your own best advocate.

Mistake #2: Forgetting To ASK & TELL

If you are just showing up for your appointments without a pen and a legal pad full of questions, list of concerns—and your spreadsheets with all your number comparisons, you’re missing out on a valuable wisdom-gaining experience. When you choose to be more prepared before your doctor walks through the door, you’ll have a greater chance to engage and partner in conversation.

Here Are Your Top 3 “ASK’s”:

1. What’s your “take” on my last labs and what can I do to impact them more favorably?
2. Should I need renal replacement, do you think I’d be eligible for transplant?
3. If not now, what could I do to improve my chances?

Become an inquiring mind. Never stop asking and learning.

Here Are Your Top 3 “TELL’s”:

1. Your symptoms, observations and concerns since your last visit. (Use your observation diary).
2. Obvious number changes. (Refer to your notes about fluctuations in your BP and weight, and identify lab value comparisons).
3. What you’d like to see happen, along with your future desires and goals.

If initiating dialogues with you doctor is uncomfortable for you, state it as so. For example, you can say “This is a bit awkward or embarrassing for me (—or maybe even a little bit premature), but I think it’s important enough to bring up. May I share my thoughts with you?”

If you find your doctor seems distracted when you try to open this dialogue ,or just seems too rushed to listen, you might ask if it would be okay to email your thoughts following your appointment. It’s important to feel that the door has your best interest at heart and that the door is always open for discussion. Open communication is the only way to build respect and trust. If your attempts fall on flat ears, it might be a sign to get a second opinion while exploring other care providers in your network. Your job is advocate for yourself by partnering with your care providers that “get you.” You’ll never be able to achieve your goals if you feel like you’d be walking on eggshells to approach a topic. This is your life. Demonstrate you care by being a team player.

Mistake #3: Waiting To Get Sicker

If you’re waiting to get sicker before you get serious about your future, you could be in for a rude awaking. Open your eyes to what someday could be the inevitable. Look at it this way, “It’s not a matter of if you’ll ever develop renal failure, it’s a matter of experiencing failure of a different kind. Failure to do something (i.e.; seize opportunity) while you still can.”

When you don’t have all the particulars, it is easy to think that you have more time than you actually have. This is an illusion. Try using what I call the “side-view mirror approach”  from your car. What’s that warning on your side view mirror? It encourages you to be mindful that  “Objects in the mirror may be closer than they appear.”  This can be very true for the progression of your kidney disease. Your disease may be progressing faster than it appears.

While the “if” and “when” of losing complete kidney function may still be unknown to you at this time, create an imaginary side-view mirror for yourself that reads “Renal failure may be closer than it appears.” This perception alone might just motivate you have a “ready-set-go” mindset for seizing opportunities.

The Chinese symbol for crisis combines figures depicting both danger and opportunity. We can learn from this by embracing each precarious situation as an opportunity to discover a better path.

An addict waits to hit rock bottom before doing something for themselves. You don’t have to wait until you hit rock bottom of your health, in fact you shouldn’t. Partner up with your healthcare team to create a coalition of specialists who can support your proactive intentions. This is how you can secure your best life possible.

Mistake #4: Assuming Dialysis Comes First

Most CKD patients rarely pick transplant as their first choice, mostly because they are unaware of this opportunity—and its unparalleled value. Perhaps you thought dialysis was required before you’d be considered for a transplant? If so you’re not alone, yet know we hope you know that belief is untrue.

In the United States, less than 20%* of transplants are performed preemptively (before the need for dialysis). If there’s a chance that you could be a transplant candidate, you’ll need to proactively work a plan to attract potential live-kidney donors. If you are told you would not be eligible, be sure to verify from through a second opinion. Also, find out what you could do to change that status, like lose weight or live a more healthy lifestyle, [which are more doable than serious active infection, active malignancy, heart disease and obesity]. Learn more about restrictions, and then give it all you’ve got to become your own success story.

Mistake #5: Neglecting To Share Your Story  

Are you and your kidney disease hiding in the closet? If so, you’re not alone. I didn’t tell a sole about my condition for years. But then I realized I was doing myself and others a disservice. It takes a village to increase awareness. Your story can touch listeners heartstrings—particularly when it is shared from your heart ,and when you expect nothing in return. Listeners not only need to learn about your situation, but they also need to know the frightening realities, like more than 95,000 people are currently waiting for a kidney transplant. They also need to know that about our national organ shortage, and it’s catastrophic wait for deceased organs. No doubt your story can inspire living kidney donor offers.

Don’t think that sharing your story is pointless because if someone really wanted to help you some day they would have already told you so. This is foolish and self-sabotaging thinking. Until others truly understand your situation (and the life-threatening need), they can’t begin to imagine how they might help you (or find someone who could). It’s your duty to become a voice for all. Hope for a better tomorrow starts with you.

About The Author

As a motivational speaker, 3x published author, patient mentor, advocate and industry consultant, Risa has one goal: To empower kidney patients to become their own best advocate. Risa is the founder of Simon Says Seminars, Inc., TransplantFirst Academy, and TransplantStrong.com. You can find Risa “giving back” often as a Peer Mentor and PKD Connect Ambassador for Education with the Phoenix Chapter of the Polycystic Kidney Disease Foundation. She also serves as an advocate and peer mentor for other patient groups, including NKF’s Patient Navigators and AAKP Patient Ambassadors.

Known as a passionate role model for others, Risa used her own curiosity to carve out a more proactive path for herself and others. Now, nearly 12 years post-preemptive (live-kidney-donor) transplant later, she’s living her best life and still going strong. This is what she hopes for all transplant eligible patients. Her tips, scripts and Donor Magnet® system can be found in her books: “In Pursuit of A Better Life: the Ultimate Guide For Finding Living Kidney Donors,” and “Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients” both available on Amazon.

Her most exciting achievement can be found in her new Donor-Seeker® Program Platform.  For more information visits the links below:

www.transplantfirst.org

www.risasimon.com

www.transplantstrong.com