A Non-Profit 501c3 Kidney Patient Empowerment Organization

Kidney Disease

Missing Link in CKD Patient Education

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960.Proactive.Engagement.sideviewMany chronic kidney disease (CKD) patients are floating in a sea of uncertainty due to inadequate patient education and various knowledge barriers. Consequently, the patient’s understanding of various treatment options—and how the timing of engagement can impact each outcome, is often lost in the shuffle.

With the clock ticking behind the scenes, CKD patients often look to their physicians for advice. While the tendency to delay end stage option discussions early on because it can cause unnecessary fear, it also closes life-changing doors for those who could medically benefit from a timely transplant.  

Hence, early education is key, especially for patients who are told “You’ve got lots of time.” Telling a patient they aren’t “sick enough” to learn robs them from learning more and proactively fighting for their best life possible. Regardless of perceived timelines, patients need to recognize how oblivious and passive behaviors can negatively impact future outcomes.

The missing link in CKD education is the delayed timing of introductions, which are encouraged to begin at Stage 4 kidney disease. Yet, kidney patients deserve the right to discover transplant opportunities—before their declining health completely forbids them from becoming a potential candidate. They deserve the right to fight for a better quality of life when they are healthy enough to give it all they’ve got.

Physicians have the power to course-correct this conundrum by simply engaging their patients in earlier stages of in their disease continuum, (ideally starting no later than eGFR 59, as patients enter Stage 3 kidney disease). Time is king and information is power. Physicians can empower their patients by sharing information early and repeating it often. Encouraging patients to proactively slow the progression of their disease and fight for a better life becomes key to achieving better outcomes.

Patients deserve to know what their future might look like and how they can drive their best path forward. They also deserve  plenty of time to learn more, explore more and contemplate their options before time of need. It’s the only way to ensure sound decisions are make.

Asking Key Questions

It’s extremely important to encourage patients to become more engaged by  advocating for their best life possible. Encouraging patients to ask important questions and contemplating opportunities before their clock runs out is essential. 

The questions listed below encourage an open dialogue, while positioning healthcare providers as leaders who guide their patients on a more proactive path to their best life possible.

  • “Is Transplant A Better Option To Consider Over Dialysis?”
  • “How Do Outcomes Differ Between Dialysis Patients & Transplant Patients?”
  • “Do You Think I Might Be Transplant Eligible?”
  • “If I’m Not Transplant Eligible, Can I Improve My Future Chances?”
  • “What Should I Do To Secure Long-Term Transplant Eligibility?”
  • “What Transplant Centers In the Area Should I Consider?”
  • “How Do I Get A Referral to A Transplant Center?”
  • “What’s The Best Timing For Referral?”
  • ”How Long Is The Wait On The National List For A Deceased Donor’s Kidney?”
  • “Are There Long Term Benefits In Getting A Transplant From A Living Kidney Donor?
  • “How Would I Ask Someone To Consider Being My Living Donor?” 
  • “How Early Should I Start This Dialogue?”

Conclusion

Addressing important questions long before the patient is in need of renal replacement therapy is key. Educating patients as they enter Stage 3 (eGFR 59) will empower their timeline to contemplate, plan and prepare for their best outcome. Early transplant referrals will inspirit potential recipients from attracting potential donors. Finding and testing living kidney donor takes time—often years. The evaluation process for potential recipients also takes time. When education is delayed and decisions are postponed, outcomes are put at risk.  

At the TransplantFirst Academy’s founder, Risa Simon, instilled the wisdom she discovered as a preemptive transplant recipient to inspire all eligible CKD patients to seek a more proactive path for circumventing dialysis. Her pioneering efforts toward patient self-advocacy and empowerment have become the core fibers in the TransplantFirst Academy’s vision.

The TransplantFirst Academy is dedicated to bridging the missing link in CKD patient education and CKD patient empowerment, by providing healthcare providers an advanced education system beginning at early stages (starting at eGFR 59), before illness advances or depression sets in.

“When CKD Patients Are Exposed To Advanced Information Regarding Renal Replacement Therapy (Shortly After Their Initial Diagnosis), They

Are Better Equipped To Fully Participate In & Proactively

Advocate For Their BEST LIFE Possible.”

– Risa Simon, Founder TransplantFirst Academy

CKD patients need to secure a better life for themselves by becoming more engaged in the process long before illness advances. Let’s give them their best shot at living the quality-of-life they deserve.  Inspire your patients to seek a better future by offering this exceptional learning system in your office. Visit: www.transplantfirst.org

 

Five Most Common Mistakes Kidney Disease Patients Make & How to Avoid Them

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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 Chronic Kidney Disease (CKD) patient 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 those hard to pronounce words and jumbled corresponding values? Don’t assume you’re being told everything you need to know. You’re the patient and you need to take some responsibility here too by asking key questions and encouraging a dialogue. Your numbers play a significant role in the progression of your disease. They also alert you to a potential problem that you might not be aware of and that you might be able to reverse before the problem worsens.

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 BP 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 BP 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 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.

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 engage, you’ll influence the focus of each appointment from the moment your doctor walks through the door.

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. (Utilize your BP, weight and lab comparison spreadsheets).
  3. Your concerns, desires and future 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 or maybe even a bit premature), but I think it’s important enough to bring up. May I use this appointment time to share a couple of concerns I have with you?”

If you find your doctor seems distracted when you try to open this dialogue or just too rushed to listen, you might consider email communication as an alternative if your doctor is open to it. Bottom line, it’s extremely important to sense the door is always open for communication with your doctor. You should not have to walk on eggshells to approach a topic. 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. You’ll never be able to achieve your goals if you don’t feel like you’re an integral part of the team working on a plan to secure your best future.

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. By using what I call the “side-view mirror approach,” you’ll be more cognizant of potential illusions, just like “Objects in the mirror may be closer than they appear.”

While the “if” and “when” of losing complete kidney function may 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 will motivate you be fully prepared with a “ready-set-go” mindset for seizing optimal 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 with a mentor and coach-advocate along with your healthcare team to create a coalition of specialists to support your proactive intentions. This is how you’ll be able to 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. This misconception can keep superior choices beyond your reach.

Woefully, less than 3% of CKD patients choose a preemptive transplant (a transplant performed 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, if anything. (Common transplant restrictions include serious active infection, active malignancy, heart disease and obesity). Learn the rules and then give it all you’ve got to achieve the best possible outcome.

Mistake #5: Neglecting To Disclose 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 the nearly 97,000 people waiting for a kidney transplant, our national organ shortage and it’s catastrophic wait for deceased organs. No doubt your story will elicit curiosity to learn more—and perhaps even do more.

Don’t think that sharing your story is pointless because if someone really wanted to help they would have already done so. This is foolish and self-sabotaging thinking. Until others truly understand your situation and the national 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 and private coach, Risa has one goal: To empower kidney patients to become their own best advocate. Risa is the founder of the TransplantFirst Academy, The Proactive Path and Simon Says Seminars, Inc. Risa 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,” Risa 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 available on amazon. For more information visits these links:

www.transplantfirst.org 

www.theproactivepath.com

www.shiftyourfate.com.

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