© 2022 Simon Says Seminars, inc.| TransplantStrong

Transplant Before Dialysis: It’s Time to Do More Good

These days, securing a kidney transplant—before dialysis, requires more luck than medical qualifications. It seems that the biggest barrier to transplant is not so much disqualifying health factors, as much as it is about knowing how to proactively secure a transplant before dialysis is required.

To remove this barrier, physicians and patients must agree to think in a completely different way. Education providers must focus on more proactive measures to achieve better outcomes—and patients must be willing to engage long before they experience the full effects of their disease.

Neither party can remain “stuck in neutral” without forfeiting success.

Distractions can deter even the best of intentions. Apart from fear and denial, getting (or staying) on dialysis can appear to be so much easier than securing a transplant. With dialysis, there are zero health prerequisites and no wait times other than their fistula maturing. Initial vein mapping ultrasounds and access procedures seems fairly innocuous compared to a transplant surgery that requires an extra kidney.

On the other hand, dialysis ends up being much more difficult. Just ask anyone already on it. From time-consuming hook-ups and grueling blood cycling procedures—to its after affects that zaps the users energy and prohibits them from their favorite foods. Unlike a kidney transplant, dialysis cannot replace hormones and vitamins needed for good health and well-being. At best, dialysis can only provide about 10% renal function – a far cry from a round-the-clock transplanted kidney.

To secure a transplant, patients must be encouraged to advocate for a transplant upstream, when they have adequate time and more energy to fight for a better life. The status quo for patient education has been to delay renal replacement options until the patient nears the need for dialysis. Because of this, the possibility of securing a transplant before dialysis, (known as a preemptive kidney transplant or PKT) is severely underutilized.

Providers must agree that these standard norms are not in the patient’s best interest. For those who believe delayed patient education does no harm, it’s time to come to grips with the fact that delayed timelines do no good.

Our profession’s duty and call to action must be to preemptively detour patients from unwittingly sleepwalking their way to dialysis—particularly when the chance of achieving a better outcome is possible.

The truth is that the most qualified transplant candidates lose their ability to bypass dialysis because they were not encouraged to engage in the process earlier. Providing early transplant information is a proactive right.

Preemptive transplant information cannot be doled out just to those who appear eligible after they lose significant renal function. It’s morally wrong to withhold this information, even if practitioners think the majority of their patients may never be transplant-eligible. Who is to say, those who may appear to be ineligible today couldn’t become eligible in the future, given the chance.

It’s time to flip the “content- information switch” into its “ON” position earlier in a patient’s disease continuum. Patients deserve to know all their options—long before they are forced into the only survival option remaining. We have a duty to help our patients  thrive, not just survive.

Our professions Hippocratic oath is no longer good-enough.

“First, Do No Harm” allows for subjective interpretation and old mindsets to prevail.  A more universally supportive pledge begins with “First, Do More Good.”

It’s time to open the gate towards better outcomes for all.

By Risa Simon

Cultivating The Good Life After Transplant

Life After Kidney Transplant

With much of our upfront focus centered on receiving a transplant, it comes as no surprise that our attention to our life after transplant is often left to “afterthought” management. Yet, the duty of becoming a transplant recipient claims ownership to an enormous responsibility that must not be overlooked or undermanaged.

Most of the responsibility has to do with becoming more mindful of all the “do’s and don’ts” associated with staying healthy and keeping our newly adopted kidneys functioning well and for as long as possible.

One of the most significant life changes after transplant deals with taking lifetime immunosuppressant medications. These medications are essential to ensure transplanted kidneys don’t reject. This daily requirement requires a delicate balance between adequate immunosuppression and minimizing risks for infection and disease.

Keeping Yourself Safe & Out of Harm’s Way

As a former infection control specialist, this responsibility came somewhat natural to me. To others, however, this new way of life of being more careful, can be somewhat daunting. Of course, if washing your hands often and using barriers to open and close public doors is your thing, these protective practices are more instinctual. While you don’t have to be a germaphobe, you do need to become overly cautious.

For me, wearing a mask in public has become fairly common practice. When traveling on a plane or even waiting in the reception room at the doctor’s office, you’ll most likely find one on my face. You can also find me at the grocery store or pharmacy with a mask during high flu season.

Of course, this is my choice and not a requirement post-transplant. Most transplant patients simply need to be more cognizant of their surroundings by being more observant. Washing hands often, using barriers to open doors and carrying a bottle of hand sanitizer may be sufficient. Though, staying clear of anyone who may be sick, has recently been sick or has been around anyone who is or has been sick should be a standard operating procedure.

Educating family and friends about the importance of these protocols makes life a lot easier. It is extremely helpful when people close to you are willing to be extra cautious. I consider it a huge gift to have someone tell me in advance of a get-together, that they may need to cancel plans because they could be putting me at risk. Let your friends and family know that their forethought is immensely appreciated.   

Medication Management

The most critical aspect of post-transplant life is taking required medications as described. Likewise, it’s essential to show up for all follow-up appointments and have the discipline to repeat recommended blood draws at prescribed intervals to ensure immunosuppression is managed at proper therapeutic levels.

Here’s a short list of top priorities that kidney transplant recipients need to be mindful of:

  • Take your medications exactly as instructed
  • Contact your transplant team when you experience concerns
  • Avoid being around people who are sick 
  • Drink plenty of water to stay hydrated 
  • Eat foods low in salt, fat, and cholesterol
  • Routinely exercises, as recommended by your doctor

While receiving a transplant is often an exciting life event, recipients can experience unfamiliar feelings while undergoing this major life change. Emotions can include:

  • Anxiety
  • Stress
  • Frustration
  • Guilt

Talk About Your Feelings 

Do not be embarrassed to talk about your feelings, fears, and concerns. You don’t have to “go it” alone! Chances are if you’re experiencing these emotions, others are too.  Talking to others can offer tremendous emotional support. Of course, family members and friends can provide a great support network. However, speaking with more experienced kidney patients can take your conversations to a higher degree of support and understanding.

Connecting With A Mentor

There are experienced kidney patients who receive tremendous joy from helping other patients who are going through what they once went through. These volunteer “mentors” have been trained to help patients like you. Mentors offer a unique way to discuss personal topics that are rarely discussed in the exam room. There’s an almost magical symbiotic relationship created when you share your concerns with someone who understands what it’s like to be in your position.

Mentors are not clinical professionals and therefore do not offer medical advice. What they do offer, however, is real-life experiences that can transcend emotional fear into emboldened patient empowerment. No one knows what you are going through more than someone who has gone through it. Mentoring is typically free of charge and all conversations are kept confidential.

Peer to Peer kidney patient mentoring programs are offered through the National Kidney Foundation, the Polycystic Kidney Disease Foundation and will soon be offered by the American Association of Kidney Patients.

Get Movin’ & Groovin’

Eating healthy and keeping your body moving can help improve your heart and lung health, prevent weight gain and even improve your mood.  Talk to your doctor about the type of exercises that may suit you best and the recommended amount of time and frequency for an ideal exercise routine.

Though our kidney transplant surgery was successful, there is always a possibility that our immune system may choose to fight the donated kidney or stop working overtime. The long-term success of a kidney transplant depends on many things. You should:

  • Be seen by your transplant team on a regular basis and follow their advice
  • Take your anti-rejection medications daily in the proper dose and at the right times, as directed by the transplant team, to keep your body from rejecting your new kidney.
  • Follow the recommended schedule for lab tests and clinic visits to make sure that your kidney is working properly.
  • Follow a healthy lifestyle including proper diet, exercise, and weight loss if needed

Secure Your Quality of Life

Rejection is a serious complication that may occur after receiving a transplant. Since you were not born with your transplanted kidney, your body recognizes the new tissue as “foreign” and will try to protect you by “attacking” it. This response is why we are required to take anti-rejection medicines for life to prevent the possibility of rejection.

There are two common types of rejection. The first type is known as an Acute Rejection which usually occurs anytime during the first year after transplant and can often be treated successfully. The second type of rejection is known as Chronic Rejection. Chronic rejection usually occurs slowly over a long period of time. 

Use this checklist to minimize your risk of rejection and help your transplanted kidney last as long as possible—and at optimum levels of function:

  • Make the taking of your medicine part of your daily routine
  • Use phone alarms to help you remember when to take your medication.   
  • Keep your transplant team up to date on your medical history.
  • Report medication side effects, like high blood pressure, weight gain, infections, and suspicions of skin cancer.
  • Report the sign of infections immediately.
  • Minimize exposure to other people who are ill or were recently ill, or exposed to others who have been ill. 
  • Be sure to keep up with recommended vaccines and avoid live vaccines (Live vaccines can include nasal influenza and shingles). Also, stay clear of people who have received live vaccines for several weeks.
  • Practice safe food handling techniques. Wash, peel and wash again.
  • Minimize your risks for diabetes, heart disease, cancer, bone disease, high cholesterol, anemia and gout with diet and lifestyle changes. Ask your doctor and renal dietitian for some coaching in this area.

Diabetes Risks

Even if you did not have diabetes before your transplant, you may develop diabetes after transplant. This type of diabetes is called new-onset diabetes after transplant or NODAT. This can occur as a side effect of immunosuppressant medications.

Your risk can be higher if you are obese or have a family history of diabetes, so be sure to be mindful of your diet (minimize carbohydrates) and exercise as well. Likewise, your labs should include glucose readings for high blood sugar levels. These readings can help you identify issues at earlier onsets. Make it your mission to minimize your risk for diabetes and its propensity to cause serious damage to your heart, blood vessels, eyes, feet, and nerves. 

Heart Disease Risks

Kidney transplants recipients are at higher risk for heart disease as well. Risk facts increase for those who are: smokers, diabetic or overweight, have high blood pressure, high cholesterol, high blood lipids, and who have been on dialysis for a number of years. 

To minimize risks, control your high blood pressure, manage cholesterol and blood lipids, stop smoking, maintain a healthy weight and exercise as prescribed by your healthcare providers.

High Cholesterol Risks

Kidney transplant recipients can also have higher cholesterol and lipid levels in the blood after transplant due to medication side-effects. Weight gain, poor diet, family history or lack of exercise can also increase these risks. 

High cholesterol can lead to serious health risks such as clogged blood vessels which increases the risk of heart disease and stroke.  Be sure to eat a heart-healthy diet, exercise and discuss lipid-lowering medications with your doctor.

Cancer Risks

Your immune system is key to keeping your body from getting cancer. Anti-rejection (immunosuppressive) medications decrease your immune function and while doing so, they decrease your body’s defenses for certain types of cancer.

There are things that you can do to lower your chances of getting cancer. Skin cancer is the most common type of cancer.

Fair skin individuals, who live in high exposure areas or have a history of skin cancer have an even higher chance of getting skin and lip cancer. 

Use these tips to help you minimize your risks for cancer* 

  • Avoiding direct sunlight
  • Staying away from tanning booths
  • Wearing UVA and UVB sunscreen protection
  • Performing self-examines of your skin and lips regularly. 
  • Seeing a dermatologist for a yearly exam at a minimum.

*Cervical, breast and colon cancer can also be a risk for female recipients, and prostate and colon cancer can be a higher risk for men.

Bone Disease

Bone disease (also known as chronic kidney disease-mineral and bone disorder or CKD-MBD) can occur from medication side-effects, previous kidney disease, diabetes, smoking, lack of exercise, menopause, or from several years on dialysis.

Check your bone health to ensure you are not at risk for bone disease which can cause weak and brittle bones and increase your chance for fractures. Your doctor can order blood tests and bone density scans. Weight-bearing exercises such as walking, biking and using weights is a good way to increase bone and muscle strength. 

Anemia

Following a kidney transplant, you may be susceptible to anemia (low red blood cell count). This can be caused by blood loss during the surgery, medication side-effects, an infection, abnormal breakdown of red blood cells, or organ rejection.

Blood pressure medication can also cause your body to make fewer red blood cells. If you have anemia your doctor may prescribe an iron supplement or other medications. There are many choices for iron pills; if you do not tolerate one iron supplement, ask about other choices. Your doctor will work with you to decide on the best treatment. 

Gout

Gout is a condition that occurs when high blood uric acid levels cause crystals to build up in the joints, causing painful swelling. Your body may have a hard time getting rid of uric acid (a normal waste product in the blood) after your kidney transplant. This is often due to side-effects from medications, such as cyclosporine, leading to a high uric acid level in blood. High blood uric acid levels or gout is often managed by:

  • Medication (though it is best to avoid non-steroidal anti-inflammatory drugs (NSAIDS) whenever possible)
  • Limiting your intake of red meat, seafood, sugared soft drinks and alcohol (especially beer)
  • Maintaining a healthy weight
  • Controlling high blood pressure, high blood lipid levels, and diabetes

Financial Aid 

If you are having trouble paying for your prescriptions, there are organizations that allow you to apply for prescription assistance.  Here are a couple of resources: The Partnership for Prescription Assistance, The RxAssist Patient Assistance Program, plus a number of pharmaceutical companies offer co-pay cards to help with a patient’s out-of-pocket expenses. Check with your transplant pharmacist and social workers to discuss the prescription medications you are currently taking to see what may be available and if you would qualify.

Your Attitude Matters Most!

As motivational speaker Zig Ziglar said many years ago, “It is your attitude, more than your aptitude, that will determine your altitude.” The latest research proves he was right. In fact, attitude is a better predictor of success than IQ or grade point average.

Dr. Martin Seligman, author of Learned Optimism found that negative people get sick more often, are divorced more frequently, and have more family issues than optimistic folks. Optimistic people see their attitude as a choice, rather than a result of what happens to them. Unfortunately, most people don’t see it that way. Yet, when they step back and successfully give it a go, they become instant believers. 

The Huffington Post describes positive attitudes as one of the most exhilarating environments to be around. I couldn’t agree more. It’s really up to us to create this electric energy field. The choice is ours. Do we want to reach for the stars or gaze at the ground beneath us? I vote for keeping our chins up. Give it a try. It’s an instant face-lift that can replace fear and scarcity with abundant gratitude.  

As transplant recipients, we hold immense gratitude for this remarkable “second chance” we’ve been given to live a better life and longer life. We must never lose sight of that feeling, for it’s our kidney’s north star heart that continues to bless this wonderful life we now live.

Risa Simon is best known as a positive-disrupter, enthusiastic cheerleader and a passionate patient communicator who’s on a mission to empower kidney patients to proactively advocate for their best life possible. As founder and CEO of TransplantFirst Academy, The Proactive Path and Simon Says Seminars, inc., Risa proudly emboldens kidney patients to visualize a new North Star—a better and longer life. For more information on her seminars, webinars, books and workshops, contact: Risa@TransplantFirst.org or visit www.TransplantFirst.org/Finding-Kidney-Donors

Proactive Engagement Improves Outcomes for Chronic Kidney Disease Patients

Chronic Kidney Disease

Approximately 30 million American adults have Chronic Kidney Disease (CKD), yet only 10% are aware they have it; the other 90% have no clue. Patients find themselves completely baffled when they are told they’ve lost significant kidney function without prior warning. For those who crash into renal failure, their confusion turns to outrage once they realize that an opportunity to change their fate no longer exists.

How can this life-threatening disease be missed by our healthcare system’s radar and cause such a negative impact to so many lives? The answer to that question continues to challenge most patients and providers. Aside from the fact that CKD has no recognizable signs or symptoms in its earlier stages and can go undetected for years, preventive screenings to prevent illness and identify problems stand out as the missing link.

While most healthcare organizations purport to offer comprehensive public health and preventive medicine, only a percentage actually do. Because of this, innocent bystanders forego comprehensive health screenings, nutritional counseling, medication reviews, and educational activities that empower preventive self-advocacy.

Sadly, without this focus, chronic kidney disease patients inadvertently find themselves “sleep-walking” their way to dialysis without ever realizing they could have secured a better and longer life, given the chance.

Are practitioners to blame for this diagnosis dearth? Knowing patient education and screenings require additional time and resources (a commodity most healthcare providers lack), perhaps the insurance industry and healthcare system bureaucracy are target antagonists?

One might have thought that the passage of Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), an incentive for physicians to offer more by participating in alternative payment models, would have solved this problem. Yet, chronic kidney disease specialists (nephrologists) can only participate in these models when caring for dialysis patients—something kidney patients hope to forestall or completely avoid.

Fortunately, newly proposed legislation now includes upfront payment models to improve early detection and diagnosis of kidney disease. The objective behind this admirable initiative is to provide physicians financial incentives to preventively screen, diagnose and educate their patients on how to slow the progression of their disease and secure their best treatment option.

chronic kidney disease
Payment Incentives to Influence Patient Engagement

The proposed model, known as H.R.3867, suggests a pilot program within the Department of Health and Human Services (HHS). The model proposes a per-member-per-month payment structure, which would offer nephrologists a financial well that can be utilized to provide proactive patient engagement. This is particularly helpful for “change agent” practitioners who feel stuck because they don’t have the time or staff resources to provide this type of engagement. 

In this new model, practitioners are encouraged to proactively engage their patients in shared decision-making for better outcomes. Moreover, early engagement offers an extended timeline to transplant candidates who are seeking a preemptive transplant (a transplant before the need for dialysis)—including additional time to help hopeful candidates find a living kidney donor.

Since this proposed payment structure already exists for dialysis patients, it should be a seamless act to expand on it. After all, shouldn’t the patient-centered goal be to reduce the incidence of people crashing into renal failure and requiring dialysis, rather than just managing dialysis? It could be the patient’s only chance to secure a better life. 

Undeniably, early diagnosis, education, and engagement contribute to a chronic kidney disease patient’s quality of life. Early engagement can also reduce costs for insurance companies, lower hospitalizations and re-admissions, and decrease mortality rates; all of which are vital measuring sticks for dialysis and transplant centers.

It’s time to spread the word about this life-enhancing triple-win. Talk to your elected officials and make your voice heard.

Looking for patient engagement resources (books, seminars, webinars, mentoring and coaching) to empower patients to become their own best advocate, visit: www.TheProactivePath.com and www.ShiftYourFate.com. For programs on how to help transplant candidates end their wait by finding potential living kidney donors, visit: www.TransplantFirst.org

Article Snapshot: Proposed legislation to improve early diagnosis for chronic kidney disease and offer proactive patient engagement leads to better outcomes, by offering financial incentives to nephrologists.

Increasing Living Kidney Donor Transplants

HOW TO INCREASE LIVING KIDNEY DONOR TRANSPLANTS

THE CHALLENGE
Nearly 100,000 people are waiting on a list for their much needed kidney transplant and only 20% of the half million patients on dialysis make it to the transplant wait list. Of those, nearly 5000 die while waiting each year. It is a well known fact that transplant patients live longer and better lives at a fraction of the cost of dialysis care, yet the wait for a deceased donor’s kidney takes years.

PROPOSED SOLUTIONS
1. Encourage transplant eligible pateints to end their wait by finding potential lioving kidney donors. Provide template letter examples, outreach material samples and communication strategies in pre-transplant and nephrology practice settings. [Looking for templates, examples and samples? Visit this link: https://transplantfirst.org/finding-kidney-donors/

2. Inform patients that a transplant provides the best outcome. When providers unleash a proactive path to preemptive transplantation, eligible patients can work to AVOID dialysis.

3. Provide a more efficient and compassionate processes for donor screening and work-up needs to be implemented to avoid disinterest, frustration and change of heart.

4. Encourage reimbursement of living donor’s loss of wages and out-of-pocket expenses to eliminate financial barriers to donation.

5. Boost referrals and increase live-donor education at dialysis units and nephrology clinics. [Fact: Only 20% of the dialysis population is listed for transplant.]

6.  Increase kidney paired donation (KPD) awareness. [Only 10% of all living kidney donations are engaged in swaps, a procedure that allows best-matched donors and recipients to be paired]. Peer mentoring can support such an increase, particularly when incompatible donors are told they are not a match.

7.  Work together to help patients overcome barriers to live-donor transplant opportunities. Hemodialysis units, nephrologists and transplant center personnel must work together to build bridges to better quality of life outcomes.

Simply put: There is no excuse for not meeting these challenges.

You can help reduce the enormous wait list and needless loss of life (and suffering) experienced for those waiting on the list, by proactively engaging with your patients. Learn how to help your patients increase their odds of finding a living kidney donor here: https://transplantfirst.org/finding-kidney-donors/

Note: Considerable content in this article was excerpted from: ASN KidneyNewsOnline: Kidney Transplantation 2017 Breaking Down Barriers and Building Bridges.

finding kidney donors
Kidney transplant hopefuls role play ways in which to communicate their need for a living donor

 

Missing Link in CKD Patient Education

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

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.