© 2020 The Proactive Path: Empowering the Steps Ahead

Untethered Truths: The Moral Imperative Behind Preemptive Transplantation

If history is a global indicator of end stage renal disease (ESRD), a vast number of people will face an unimaginable reality. Currently, 37 million American adults are estimated to have kidney disease, and most are unaware until they advance to end-stage challenges.   

Moreover, the 726,000 individuals already suffering ESRD challenges are not alone. Each year they are joined by 126,000 unsuspecting newcomers.1

While the rate of this growing population is highly disturbing, the destructive consequences of the disease are far more alarming. Over the last three decades, more than 980,000 ESRD patients lost an early battle to this disease—and it’s not getting any better. The premature death toll is estimated to rise to 1.4 million by 2027.1

Today, half a million ESRD patients are struggling to stay alive on dialysis. Of those, more than 95,000 pray they’ll survive years of waiting for a kidney transplant from our nation’s insufficient organ supply. Yet, a larger pool of patients could have gained a better life story if they had not been overlooked as potential transplant candidates.1 Sadly, the lion’s share of ESRD patients will never actualize a transplant goal because they are already on dialysis or moving along its predestined conveyor belt. 

Beyond patients crashing into urgent need, dialysis conversations are often presented as first line options, with hardships and mortality statistics stuff under the rug for a later date. Patients who say yes to dialysis don’t think of it as an option that is less desirable than a transplant. They think of it as a modality that is going to keep them alive.

Aside from its mechanics, the impact of what dialysis cannot do is far more difficult to grasp. For example, most patients don’t realize dialysis is incapable of removing all the body’s toxins, replenishing essential hormones or replacing active vitamins. They are rarely told those sacred functions are an “inside job,” managed exclusively by healthy human kidneys. Without this understanding, patients can be easily swayed to disregard transplant considerations until after starting dialysis.

These facts deserve more than a quick “gloss-over.” Similarly, the consequences of what the patient will face if they delay transplant goals until after starting dialysis must be underscored. Very few patients realize that postponing transplant considerations could lead to less favorable outcomes, jeopardize candidacy, and even shorten their lifespan. Patients deserve to know the untethered truths about their best options and encouraged to secure their best outcome.

Alarming statistics must also be better known in order to make informed decisions based on realistic comparisons. Sharing information about dialysis associated infection risks and the propensity for life-threatening comorbidities must not be left behind. Likewise, statistics matter. Informing patients that 20% of the 100,000 ESRD patients who begin dialysis each year are expected to die within their first year—and 50% are likely to die within 5 years, are prime examples.2

While critical facts are not easy to share, they are essential for life and death decision-making. Hence, the profession must disclose the facts to gain full transparency before requesting informed consent.  This protocol not only mitigates liability; it also encourages eligible patients to proactively set goals to secure a transplant before necessitating dialysis.

These goals require more than late-stage encouragement to help eligible patients secure a transplant. The new normal is far more robust. It not only utilizes proactive engagement, it also enlists healthier lifestyle disciplines, timely referrals, and a pool of potential donors. Add steadfast determination and a willingness to increase awareness, and favorable outcomes are sure to follow.  

Kidneys from Living Donors

A multitude of benefits can be gained when a kidney transplant is performed with a kidney from a living kidney donor (LKD). Transplanted kidneys from living donors typically respond quicker, function better and last longer than kidneys from deceased organ donors.

LKDs also offer their recipients powerful leverage at their time of need. They do this by helping them end their wait. It timing is optimal, they help recipients bypass their need for dialysis. Receiving a kidney transplant before dialysis is required—opens the life-changing doors to preemptive kidney transplantation, or PKT.

From quality of life to better survival rates, less medical complications and reduced depression, PKT offers its recipients advanced superpowers. Those powers allow most of its recipients to play a more productive role in society, return to their jobs quicker, stay employed longer and enjoy more time with family and friends.

From a financial perspective, transplant is less costly than time on dialysis. We know this to be true because transplants save taxpayers an estimated $146,000/ per transplant performed.3

Yet, despite these extraordinary benefits, less than 3% of transplants are performed preemptively.2

For years, underutilization has been accepted as status quo. More recently, however, enlightened professionals (and patients) are starting to see the detrimental ramifications in lost PKT opportunities as an urgent call to course correct.

This article embodies that call by exposing and dismantling unconscionable PKT conundrums, in exchange for more proactive disciplines that improve outcomes and quality of life.      

Common Barriers

One of the most common barriers in PKT stems from an outdated mindset that “stable” renal function—requires no action.4 This belief ignores life-threatening consequences due to sudden declines from underlying disease and/or co-morbidities. 4,5,6 Patients rely on their physicians for guidance. The silence coming from their trusted advisors is not only deafening—its potentially life-threatening.

Trigger #1. Historically, there has been a general reluctance to initiate early renal replacement conversations for fear of frightening patients prematurely or depressing ineligible populations. While holding-back conversations might mitigate distress for some, it clearly robs quality of life from many others.

Trigger #2. Fear and social-cultural differences can keep patients from more favorable pathways.4 This is particularly true for those unable to accept their imminent loss of renal function. Nonetheless, a patient’s readiness, willingness and desire for a better life is often physician driven.

Hence, it is far wiser to use patient fear as a powerful catalyst, rather than a deterrent. Simply stated, a clear understanding of what a patient could face if they don’t proactively seek a preemptive transplant, is often more impactful than what they could potentially gain by achieving this goal.

Timing is Everything

The timing of patient engagement also plays an important role in outcome success. While the Centers for Medicare & Medicaid Services (CMS) offers a six-hour covered benefit for patient education, the program disincentivizes PKT options by restricting access to individuals above eGFR 29.7  Supported by the Improvements for Patients and Providers Act [MIPPA] of 2008, one would think the program’s name alone would ensure congruent standards to support its core purpose.   

If we agree that PKT success relies heavily on early chronic kidney disease (CKD) education, we must agree that patients deserve enough “processing time” to apply new knowledge, contemplate their options and proactively seek their best outcome.  

Likewise, we must also agree that the Organ Procurement and Transplant Network’s (OPTN) suggestion to refer patients to transplant within Stage 4 and 5 is too broad in range and vague in scope to optimize PKT opportunities.4

We know this to be true from the low rate of preemptive transplants performed to date. The few patients who discover transplant benefits and request a preemptive referral, typically find themselves in a nephrologist or transplant center “push-back” war. They’re often told it’s “too early” because their eGFR is stable or hasn’t fallen consistently below 20.

To the patient, push-back translates to “Wait to get sicker”—with no regard for protecting future eligibility or losing active donor interest.       

When patients are referred to transplant as they approach dialysis’s ledge, they experience an automatic disadvantage of insufficient time—a precondition for finding, testing and awaiting evaluation committee conclusions.

Waiting for a kidney from a deceased donor has become a guaranteed PKT “deal-breaker.” We know this to be true, because virtually all preemptive transplants are achieved when candidates present a qualifying LKD before they require dialysis.

To that end, CKD patients must be exposed to PKT options in earlier stages of disease, ideally starting as early as eGFR 59.8  This timeline will ensure patients have enough time to process their options, contemplate their future, and fight for their best life possible.

Patient Education

Despite CMS’s covered benefits for chronic kidney disease (CKD) education, very few transplant-eligible patients benefit. Much of this is due to disseminating a downpour of dialysis content prior to introducing transplant options.  Content prioritization must be improved to avoid confusion, overwhelm and blurring “optimal choice” benefits.  

Using a sales analogy, a customer is more prone to remember and connect with the first product they are exposed to, particularly if the salesperson is more enthusiastic or knowledgeable about that product. By the time a second option is introduced, the customer can fall into “information-overload,” making it difficult to discern the key differences between the two products presented.

This analogy underscores risks associated in having large dialysis organizations LDOs (who admittedly report low levels of transplant knowledge) develop and present ESRD education. Using this scenario, curriculum developers might unconsciously create bias and potential conflicts of interests.

To correct this problem, ESRD content must be developed, challenged and approved by a diverse team of transplant and dialysis professionals to reveal the full scope of balanced risks and benefits. Post-transplant recipients and dialysis patients also deserve a seat at the curriculum development table to ensure their voices are heard.

Disseminate Best Options-First!

It is well known and documented that PKT is the best option for better outcomes. This claim underscores the renal profession’s responsibility to help patients try to bypass the need for dialysis, regardless of presumed transplant interest or eligibility. While a patient may not appear to be transplant-eligible at the time of training, dialysis comparisons can encourage ineligible populations to proactively strive for future candidacy.

Of equal importance, patient education must be free of misinformation and bias. Education must also be provided upstream, in earlier stages of disease, to ensure ample time for decision-making—before they are inundated with overwhelming health burdens. Unless deeper conversations about treatment options are proactively presented, patients will be unable to make proactive decisions.

This reality is underscored by studies that show 80% of ESRD patients are inadequately educated about transplantation and living donor options.9

Motivation is Key

ESRD patients often surrender to dialysis as an inevitable destiny. The belief for most patients is that dialysis is a prerequisite to transplant—and it appears easier. Even if these patients had the energy to consider a better life option, the emotional toll from managing ESRD make that reality difficult to imagine.   

No one would argue transplant is a more difficult bridge to cross when compared to dialysis. For starters, dialysis does not require extensive medical testing or an extra kidney.

Yet, patients will never work towards achieving this goal without giving them good reason.  

Information is power. Hence, the patient’s full understanding of risks and benefits will always drive their level of interest.  

Herein lies the nephrologist’s opportunity to make a difference. By committing to delivering small, repeatable and expandable segments of patient education— (when their patients are healthier and more eager to fight for a better life), they’ll be able to contemplate their best option in advance of need.

“Luck is what happens when preparation meets opportunity.”-Elmer Letterman 

Challenges

The first hurdle for hopeful PKT recipients involves timely evaluations. Despite the high 5-year mortality rate of dialysis, transplant referrals are intentionally delayed.

Yet, if transplant referrals were viewed with the same “urgency perspective” as a life-threatening condition—and this new mindset was adopted as a mandatory “best practice,” this hurdle could be overcome.10

The next, and seemingly never-ending challenge for hopeful PKT recipients, comes with the task of finding potential donors.

It has been reported that the majority of ESRD patients are inadequately educated about transplantation and living donor options.9

Another study revealed 80% of transplant candidates polled admitted that they

are intimidated by the thought of identifying potential donors, and another 60% claimed they were too embarrassed to bring up the subject. Clearly, existing education is not addressing this need.  

Finding potential donors through family or friends is hard enough. The smarter “ask” is a request to expand need awareness through word-of-mouth and social networking.9 To that end, patient engagement programs must include guidance on how to educate the general public on the opportunity and need to increase living kidney donation.8

Improvements in patient education, including scripts and role-play examples to build confidence and strengthen interactions are also needed.4,9 Of equal importance, curriculum’s must encourage dialogues with family and friends, including how to script invitations to join campaign forces through social media. 

Additional challenges surface when potential donors change their mind. This is not uncommon. Everyone has the right to change their mind— particularly on a decision of this gravity. Transplant centers actually encourage potential donors to reconsider their decision to ensure they don’t have any doubts or concerns moving forward.

Despite this right, a change of heart doesn’t keep their intended recipient’s heart from feeling any less wounded.

Another challenge surfaces when an acceptable donor finds themselves incompatible to their intended recipient. Nearly 35% of all living kidney donors are found to be incompatible to their intended recipients. Fortunately, Kidney Paired Donation (KPD) programs offer incompatible donors a wonderful way to stay in the game and create a win for all.

One of the toughest hurdles for potential living kidney donors involves gaining family support. When potential donors tell their loved one’s that they want to donate a kidney to a friend or a stranger, it often goes over like a lead balloon.

Understandably, parents, spouses and adult children are wired to protect those they love and keep them out of harm’s way. This is where the importance of education comes into play. To gain support, individuals need to learn more about the surgery, the degree of risk, timing of recovery and their role in caregiving.

Another issue that also deters donors has to do with the amount of time they have to take off work for testing, surgery and recovery. Taking a minimum of 3 weeks off for recovery (without income) is not easy. Combine risking job security for time off work and the best of intentions can be thwarted. This, notwithstanding additional out-of-pocket expenses for applicable travel, dependent, elderly, or pet care.

While there is the possibility to request assistance for those donating to lower income recipients, hopeful advocates await the government passing of the Living Donor Protection Act of 2019.11,12 (Currently, a handful of states have passed limited variations of their own statewide bills).

Transplant centers can also cause hurdles. One of those hurdles is seen in a tactic referred to as a “cooling off” period. This intentional “delay response” protocol is used to ensure prospective donors are fully committed.

Not surprisingly, however, potential donors are disheartened by the center’s lack of response. To them, the silence is incongruent to their “urgent call” to save a life.     

Transplant centers that use delay tactics like these are encouraged to become more sensitive to the detrimental consequences for their hopeful recipients.

The challenge to find potential donors who are willing to step forward is hard enough. Add the complexity of donor evaluations, surgical risks and time off work—alongside delayed communications and the hope to secure a living donor transplant appears nearly impossible.

Providers need incentives too. Nephrologists are not fairly compensated for pre-transplant or post-transplant patient visits. Hence, a separate payment needs to be considered for time involved in transplant preparation and care—including referrals to transplant centers.4 This strategy alone holds a powerful means for increasing preemptive transplant rates.

Our current kidney allocation system is a challenge because it causes confusion. This occurs when waitlist credit is awarded on the date that dialysis was initiated. Because of this, patients often think they must start dialysis in order to earn waitlist credit.

To prevent incorrect assumptions and encourage proactive self-advocacy, educational curriculums must incorporate current waitlist timelines and a clear understanding of how the kidney allocation system works.4    

Medicare ESRD restrictions also causes financial challenges. This occurs when ESRD Medicare coverage is limited to three years for medications post-transplant. Yet, if a transplant recipient loses their coverage, and subsequently can’t afford their medications, their transplanted kidney will reject. When a kidney rejects and cannot be saved, the patient requires dialysis to survive.  Here, everyone loses. However, patients, donors and transplant centers are not the only ones who lose. The government also loses.    

For years we have known that a kidney transplant costs less than dialysis, beginning post-transplant year two. A recent Health and Human Services study reconfirmed this belief by showing a government savings of $73 million over a decade.3  [These numbers were computed by showing the first-year costs of getting a transplant to be roughly $131,000, with ongoing medication costs estimated under $3,400 annually]. These calculations present a huge savings after year two.

When you consider Medicare covers $90,000 per year for each dialysis patient (for as long as they need dialysis), you can quickly equate the financial gain from securing the longevity of each transplant performed.  

Conclusion         

While preemptive transplantation is the preferred end-stage choice for renal replacement therapy, it continues to be vastly underutilized. Communicating preemptive transplant benefits in earlier stages of disease (by eliciting discussions as early as eGFR 59—and initiating referrals at eGFR 25), could effectively remove the bulk of barriers for those who deserve a better and longer life. Helping patients understand the benefits gained in PKT is essential for increasing patient interest and desire. Teaching patients to communicate their need and search for potential donors in earlier stages of disease will also ensure they get a fair chance to achieve this goal.

Removing financial disincentives to donation by adding protections will further assist the profession’s quest to help patients thrive—not just survive.

Now is the time to encourage preemptive transplant opportunities and position PKT education as a moral imperative and critical link for advancing optimal outcomes.

Now is the time to revive the profession’s Hippocratic oath to do no harm. It’s time to do more good.  

About the Author

Risa Simon, CMC

Risa Simon is the founder of TransplantFirst Academy, The Proactive Path and TransplantStrong — and an immensely grateful preemptive (live-donor) kidney transplant recipient. Through her passionate commitment to give-back, Risa’s helping fellow kidney patients become more empowered through her motivational seminars, webinars,  tele-coaching,  peer mentoring, kidney patient advocacy and with her powerful self-help 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.

For more information contact:  Risa@TransplantFirst.org  

 

References

  1. McCormick, F, Held. P, Chertow, G. The Terrible Toll of the Kidney Shortage. 2018. JASN Editorial. J Am Soc Nephrol 29:2018.
  2. Executive Orders. Health. July 10, 2019. [website last accessed 9.29.19] gov/presidential-actions/executive-order-advancing-American-Kidney-Health/
  3. ASPE (Office of The Assistant Secretary for Planning and Evaluation). May 10, 2019. Assessing the Costs and Benefits of Extending Coverage of Immunosuppressive Drugs Under Medicare. [PDF download] https://aspe.hhs.gov/system/files/pdf/261746/Savings_From_Extending_Coverage_For_Immunosuppressive_Drugs_Final.pdf
  4. Fishbane S, Nair, V: Opportunities for Increasing the Rate of Preemptive Kidney Transplantation. CJASN  13: (8) 1280-1282, 2018 
  5. OPTN Minority Affairs Committee: Educational Guidance on Patient Referral to Kidney Transplantation. 2015. Available at: https://optn.transplant.hrsa.gov/resources/guidance/educational-guidance-on-patient-referral-to-kidney-transplantation/
  6. Cass A, Cunningham J, Snellig P, Ayanian JZ: Late referral to a Nephrologist Reduces Access to Renal Transplantation. Am J Kidney Dis 42:1043–1049, 2003. https://www.ncbi.nlm.nih.gov/pubmed/14582048
  7. Clinician Reviews (2012). Medicare Improvements for Patients and Providers Act (­MIPPA) of 2008; 22(3):5-7
  8. Simon, R: CKD Patient Education: The Missing Link. TransplantFirst Academy. April 1, 2015. https://transplantfirst.org/ckd-patient-education-the-missing-link/
  9. Garonzik-Wang, et al: Live Donor Champion: Finding Live Kidney Donors by Separating the Advocate from the Patient, Transplantation Journal. 93(11): 1147–1150, 2012
  10. Tchervenkow, J., Cantarovich, M.: Is It Time to Make Renal Transplanation Referral Mandatory? Transplantation. Feb 2020, Vol 104, Issue 2: 233-234
  11. Lentine K, Mandelbrot D: Addressing Disparities in Living Donor Kidney Transplantation. Clin J Am Society of Nephrololgy 13: 1909-1911, 2018
  12. Nadler, J., Beutler, H.R-1224. Living Donor Protection Act of 2019. 116th Congress (2019-2020). [website last accessed 9.29.19. https://www.congress.gov/bill/116th-congress/house-bill/1224/text

 

Kidney Donors Get Job Security

Kidney patients who hope to get their much-needed transplant can take a big sigh of relief now that the Department of Labor (DOL) Secretary, Alexander Acosta, clarified language that states organ donors qualify for FMLA time-off work. This means that living kidney donors are included in FMLA’s protections for an eligible employee to take up to 12 workweeks of leave (for the surgery and recovery) while they are unable to perform their job functions, without risk of losing their job.

The TransplantFirst Academy applauds Paul Conway, former Chief of Staff of the U.S. Department of Labor, who also serves as President of American Association of Kidney Patients (AAKP) and Chair of the Patient Engagement Advisory Committee of the U.S Food and Drug Administration (FDA) for his role in achieving this massive victory. This united effort also included top kidney community allies, such as the American Society of Nephrology (ASN), the American Society of Transplant Surgeons (ASTS), the American Society of Transplantation (AST) and the Renal Physicians Association (RPA).

For medically-eligible kidney patients, organ transplants are the best treatment available for kidney failure. Transplants help kidney patients either proactively avoid dialysis altogether by securing a preemptive transplant or by allowing them to transition off of dialysis treatment dependency so they can enjoy a vastly improved quality of life. Currently, in the United States, over 114,000 patients are on the organ donation waiting list and of those, over 95,000 are awaiting a kidney transplant.

FLMA wins like this not only encourage more living organ donations for the tens of thousands of Americans who await a life-saving transplant, it helps gain momentum for passing further protections for organ donors, through the Living Donor Protection Act (H.R. 1270).

Learn More about FMLA Opinion Letter here:
https://www.dol.gov/whd/opinion/FMLA/2018/2018_08_28_2A_FMLA.pdf

Learn More About AAKP Efforts Here:
https://aakp.org/press-release/labor-secretary-acosta-earns-patient-praise-organ-donor-job-protections-eve-labor-day-weekend/

Learn More about Living Donor Protection Act here:
https://www.congress.gov/bill/115th-congress/house-bill/1270

Living Kidney Donors Day 2018

The State of Arizona recognizes Living Kidney Donors as life-saving humanitarians who inspire our community to “give back” in bigger and bolder ways in Arizona’s HCR 2042 proclamation resolution for Living Kidney Donors Days in 2018.

Over 100,000 end-stage kidney disease patients nationwide pray their name will make it to the top of the list, so they can get a life-saving kidney transplant. The average wait for a deceased donor’s kidney is four and a half years; in some regions, the wait can be as long as nine years. Yet, there is a way to end this wait and improve outcomes, if communities were better informed.

Arizona State Representative Heather Carter teamed with TransplantFirst Academy founder, Risa Simon on March 8, 2018, to re-introduce resolution proclamation, HCR 2042, to make March 8, 2018 Living Kidney Donors Day in the state of Arizona. This renewal initiative is intended to extend statewide awareness and recognition in living kidney donation.

By design, the proclamation falls on World Kidney Day and Donor Network of Arizona’s Donate Life Day, to further expand collaborative efforts to expand awareness.  Simon said, “Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. They deserve a lifetime achievement award for the role they play in saving lives and inspiring community citizens to give back in bigger and bolder ways.”

The significance behind HCR 2042 is that it represents hope for nearly 2,000 people in Arizona who are in desperate need of a kidney transplant. The names of these individuals reside on a list with a 3 to 5 year waiting period. Sadly, 90 names are removed from that list each year when patients die while waiting for their much-needed transplant.  Another 50 Arizonans are removed from the list due to advanced illness, which often disqualifies them from ever receiving a transplant.

The good news is that each year approximately 575 people in Arizona are removed from the list because they received a kidney transplant. The bad news is that the list and its wait never gets any shorter. This quagmire exists because an additional 865 new names are added every year (290 more than those removed). This impossible balancing act and its life-threatening challenge continue to disrupt organ donation supply and demand.

Living kidney donation, however, holds the potential to course-correct the destiny of this deadly foregone conundrum. Simon asserts, “Our organ shortage stems from a lack of education and awareness.” She describes the statewide proclamation as a befitting salute that increases awareness and right-doing. She went on to say, “the noble acts of living kidney donors don’t end after donation. Their gift represents more than one-life saved. Their actions live on to inspire ordinary people to seek extraordinary ways in which they can engage in life-saving opportunities for others in need.”      

As a recipient of a live-donor kidney transplant, Simon said, “While those of us who were blessed with a transplant from a living donor will be forever grateful, we must not forget those left behind. Living kidney donors embody the promise of a better life and a better tomorrow. Now we need to make it a better life and a better tomorrow for all.” 

One of those humanitarians is Kati Walker, a living kidney donor who donated one of her kidneys to her children’s elementary school principal in Cave Creek, Arizona.  Kati has since become a strong advocate for living kidney donation and an inspirational spokesperson for the TransplantFirst Academy. Post-donation, Kati’s active life remains full of love and joy. Even after her donation, she continues to give back at every turn. There’s no prompting needed when you hear Kati affirm her kidney donation was “one of the best decisions I ever made!”

To date, more than 145,000 living kidney donors have selflessly saved an equal number of lives, over 2,800 of whom were saved in Arizona.  We salute them all and are hopeful more good-hearted Samaritans will follow Kati’s lead. Last year, living kidney donor transplants dropped down 39% from 2009 in Arizona alone. Through increased awareness, the TransplantFirst Academy and other organizations, like the National Kidney Foundation of Arizona and the Erma Bombeck Project, believe Living Kidney Donor’s Day holds great promise by shining light on increased awareness and recognition that can lead to a better and longer life for all.

About TransplantFirst

TransplantFirst Academy is a 501c3 non-profit organization based in Phoenix, dedicated to empowering kidney patient outcomes and increasing living kidney donor awareness. For more information, visit: TransplantFirst.org. To request an interview, contact TransplantFirst’s founder/CEO, Risa Simon, at (480) 575-9353 or via email at risa@www.theproactivepath.com

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Cardiac Benefits Following Kidney Transplant

A recent study from Kidney and Blood Pressure Research describes increased heart health in chronic kidney disease (CKD) patients after receiving a kidney transplant. A common side effect of CKD is high blood pressure and left ventricular hypertrophy, which occurs when the heart’s main chamber (responsible for releases blood and oxygen to the rest of the body) becomes thicker and less effective.

While our heart and kidneys play an important and most supportive role to one another, they function very differently. For starters, the heart pumps blood through the body, and our kidneys take waste out of the blood. 

Every day, our kidneys filter about 120 to 150 quarts of blood to produce about 1 to 2 quarts of urine, composed of wastes and extra fluid.  The heart, on the other hand, has chambers and values that control how arteries carry blood away from the heart and veins carry blood back to the heart.  

As the chambers become less effective they cause strain on the heart that can force the left ventricle to work harder. As the workload increases, the muscle tissue in the chamber wall thickens. When the heart muscle becomes enlarged, it can lose elasticity and eventually become too weak to pump with adequate force. This weakness can result in a variety of risk factors ranging from cardiac fatigue to complete heart failure.  

While we are well aware of the supportive connection between cardiac function and renal function, we now know more about the benefits of how a good functioning kidney can support heart health.   

In one study,(3) researchers obtained blood samples, electrocardiograms, ultrasounds of left heart chambers, and Doppler recording showing blood flow from thirty-one CKD patients before and after their transplant. The conclusion demonstrated that transplant patients had a decreased consequence of the negative cardiac effects after their kidney transplant.

It is believed that transplanted patients are better able to lower systolic blood pressure and in turn, decrease the thickness of the left ventricle structure.

References:

  1. https://www.cdc.gov/ncbddd/heartdefects/howtheheartworks.html
  2. https://www.niddk.nih.gov/health-information/kidney-disease/kidneys-how-they-work
  3. Hewing, Bernd, et al. “Improved Left Ventricular Structure and Function After Successful Kidney Transplantation.” Kidney and Blood Pressure Research, vol. 41, no. 5, 10 Oct. 2016, pp. 701–709., doi:10.1159/000450559.
  4. Özkaya, Özge. “Kidney Transplants Seen to Improve Aspects of Cardiac Health in CKD Patients.” CKD News, BioNews Services, 26 Oct. 2016

For more information about how to end your wait for a kidney transplant or find potential living kidney donors, visit https://www.theproactivepath.com or check out this patient empowerment book by Risa Simon:  In Pursuit of a Better Life .

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.

Become A Living Kidney Donor-Magnet-Pro

Donor Magnet Pro’s are hopeful recipients and outreach teams who know how to enlighten listeners about what it takes to become a living kidney donor. This Top 12 FAQ List was recreated to help you share insights on what’s involved in living kidney donation.  

  1. Who can be a living kidney donor?

Most people in good health can be evaluated to be considered as a living kidney donor.  The qualification process typically begins with an online or telephone screening that determines if a thorough evaluation should follow. The evaluation typically includes several interviews, exams, scans and lab tests. The transplant center requires these tests to ensure the person who wishes to donate is healthy enough to do so.

  1. What does the process involve?

The Surgery:

The surgery is performed with small incisions, which is known as a laparoscopic surgery. In kidney donation (also known as a nephrectomy), the procedure typically involves four 1-inch slits in the area of the stomach and bladder. There is also one four-inch incision made around the navel. This incision is a bit larger, so the kidney can be removed from this area.

Risks:

The surgical process for removing a kidney from a healthy individual has become a fairly standard procedure. Nonetheless, the procedure still carries the same level of risk as any other major surgery. The most common risks associated with kidney donation (also known as a nephrectomy) includes blood clotting, infection and a reaction to the anesthesia. The risk of death from donating a kidney is less than one percent, or 0.0003 % (which is about 3 in every 10,000 surgeries).

Hospital Stay:

Hospital recovery usually involves 1-3 overnight stays. Discharge is determined by the donor’s health and their ability to get out of bed and walk on their own.

Discomfort:

Although the donor will feel pain after surgery, pain medications will be provided to help patient comfort. It is not uncommon for some patients to experience constipation from pain medication. When this is the case, laxatives are provided. FAQ: Understanding Living Kidney Donation. 

Most living kidney donors can resume their regular activities within 3 weeks after donation. Depending on the type of work they perform, they can often go back to work within 3-5 weeks. If the donor’s work is office work, they can often get back to work even sooner. Those engaged in more strenuous activities are advised to refrain from these types of tasks until they are completely recovered.

  1. Who is going to pay for the cost of the procedure?

The medical insurance covering the individual who receives the donor’s kidney (and kidney transplant procedure) will also cover the donor’s medical costs. Things that are not covered or paid for (by the transplant patient’s insurance company) is the donor’s time off from work and travel costs. There are a few states that now require employers to cover living kidney donor’s time off work for a set period of time. *It is wise to check with employer policies, state laws and federal updates to ensure both donor and recipient are up-to-date.

  1. Can a donor still live a normal life after surgery?

There are many studies showing living kidney donors doing quite well after they donate a kidney. For the most part, their health and quality of life remains unchanged. The most notable change expressed by most living kidney donors comes in the form of the perpetual joy they feel for achieving such an extraordinary triumph.

Living kidney donors aren’t typically required to take new medications following the surgery, other than a pain medication or a stool softener for a short period of time. Kidney donors do not need to follow a special diet after they are discharged from the hospital. Likewise, they are not required to avoid alcohol, except for the period of time they would be taking pain medication. The guideline for alcohol consumption after kidney donation is fairly standard. Living kidney donors should be simply be responsible and consume alcohol in moderation.

  1. What emotions will the donor feel before or after surgery?

Like any excursion someone has never taken before, there can be a sense of excitement and anxiety about the journey ahead. Typically, the more one understands going into the process, the less anxiety they’ll experience. Post-surgery, most donors report a feeling of honor and joy from their heroic achievement. Remarkably, their sense of joy has reduced post-surgical pain and associated inconveniences.

  1. How successful are living kidney donor transplants?

Hospitals with established transplant programs show very good transplant success rates. Most transplant centers* exceed a 95% success rate one year after transplantation. The best success rates are seen in transplants from living kidney donors. (*Transplant programs are required to keep track of their success rates. Be sure to ask the center to share their success rates).

  1. Does the age of the donor matter?

Generally, there the ideal age range is 18-65 years old. Of course, the donor will need to prove (during their evaluation) that he or she is healthy enough to donate a kidney safely. While there have been donors who have donated a kidney after the age of 65; younger donors are preferred. Family members are also preferred, as they offer a better match. FAQ: Understanding Living Kidney Donation.

  1. What happens if the donor’s kidney isn’t a blood type match?

When the living kidney donor is not a match for their intended recipient (because they are incompatible in blood type or have antibodies to the recipient) they can still donate—just not directly. This is accomplished through a Paired Exchange Program.

In Paired Exchange, a computer algorithm is used to find a better match for incompatible groupings. In this model, the living kidney donor’s kidney is swapped with another person’s incompatible living kidney donor. The picture below illustrates this concept. In this scenario, a mother hoped to donate to a daughter and a brother hoped to donate to a sister. Both were unable to donate directly because it was determined that their kidneys would unlikely function well for their intended recipients. After they were told about the Paired Exchange Program, they agreed to be matched up with other incompatible pairs. In the example below, the mother donated to the brother’s sister, and the brother donated to the mother’s daughter. Though this example shows two incompatible pairs, it is not uncommon to see a larger grouping of individuals in a chained sequence of domino-like events.

  1. What happens if a donor changes their mind? 

Interested donors can change their mind at any time about donating. Changes of this nature are kept confidential. The only information shared will be communicated as follows: “The donor was not an ideal candidate.”

  1. Will donating a kidney prevent the donor from getting pregnant or affect their sex life?

Donating a kidney has not shown to reduce the fertility of men or women. Because the body requires time to recover from the surgery of donating a kidney, it is recommended that women wait 3-6 months after donation to get pregnant. In the meantime, a donor can engage in sexual activities after their incisions have healed and they feel comfortable enough to do so.  

  1. Does a kidney donor get anything for donating?

Legally, there can be no payment for kidney donation. Though, we are told that there is high value gained in the perpetual joy that comes with saving someone’s life. Some donors explain this as their highest “life achievement.” Others have called it their own “Mount Everest.” Living kidney donation is

a very personal experience. Not everyone can be a living kidney donor. It takes a very special person to connect to this humanitarian call. It also takes a very healthy person to even qualify.  

  1. What’s the first step for someone to see if they’d qualify?

The first step is to call the kidney patient’s designated transplant center to schedule a telephone screening. During the call individuals can ask questions and get more details about the tests involved, the surgical procedure and recovery. Even if the person calling is not completely sure they want to proceed, this call can provide insight to help them decide if living kidney donation is right for them.  All donor coordinator conversations are handled in strict confidence* to ensure callers can ask questions without pressure or concern. *The recipient will never know someone called in or their status, unless they tell them directly.

You Can Also Offer To Be a Back-Up

If someone has been told they are not needed (at this time), but they’re still interested in donating, they can offer to be a “backup.” This is important, should someone unexpectedly change their mind or be disqualified. (Often times, it takes several potential donors to be tested before a qualified match is found). If individuals are told they aren’t needed following the surgery, there is another way to proceed. They can also contact a hospital that performs kidney transplants in their area and tell them they’d like to be help one of their patients in need. An altruistic offer like this can often kick-off a Paired Exchange Chain. In these types of grouped events, one living kidney donor can offer extended life to a number of people in need. They do this by providing the missing link (their kidney) to be the final piece of the puzzle that completes the chain.

Key Benefits to Receiving a Transplant from a Living Donor:

  1. Ends the Wait

A kidney from a living donor “Ends the 3-9 Year Wait” for someone in need of a kidney transplant. The surgery can also be scheduled at the donor’s convenience when the kidney patient needs it most—and before their health declines, so they are not at risk for losing transplant eligibility.

  1. Offers a Better Match

Living kidney donors are thoroughly tested to ensure the best match for their recipients. Donor testing also minimizes potential risks for both the living kidney donor and the recipient.

  1. Offers Better Function

Kidneys from living donors are known to function immediately after transplant. They can also last twice as long as a kidney from a deceased donor. This could potentially equate into an additional 10-12 + years of function.

  1. Presents an Opportunity to Bypass Dialysis

Most kidney patients need to be on dialysis (to stay alive) while they wait for a deceased donor’s kidney. Hence, living kidney donors can help those in need receive a transplant before the need for dialysis. This is called a preemptive transplant. This process allows end-stage kidney disease patients to bypass* the need for dialysis altogether. *Note: Living kidney donors must be tested and approved for the surgery before the recipient’s function drops to a level of requiring dialysis.

 

For more information on how to become a Donor Magnet Pro, visit www.FindingKidneyDonors.com 

 

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://www.theproactivepath.com/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://www.theproactivepath.com/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

 

Living Kidney Donors Day

Living Kidney Donor

The state of Arizona’s proclamation HCR 2019 recognizes Living Kidney Donors Day, as the first state in the nation to recognize Living Kidney Donors for their selfless humanitarianism. Of course, we owe a great deal of gratitude to Arizona Representative Heather Carter, R-Cave Creek, who teamed up with Kati Walker, media spokesperson for the TransplantFirst Academy (TFA) and proclamation’s brainchild and TFA’s founder, Risa Simon, for creating this well-deserved day of tribute.

On March 20th, we ask you to reach out and honor all living kidney donors (LKDs) who donated a kidney to save and extend the life of someone in need. LKD’s not only save lives, they give hope to who are waiting for a kidney from a deceased organ donor, which often takes 3-5 years. They also inspire ordinary people to seek extraordinary opportunities, by contributing to one of the most amazing, once-in-a-lifetime achievements available on this planet!

Living Kidney Donors Day helps us remember these humble heroes, which is important since LKD’s don’t wear a Medal of Honor or a superhero’s cape. They don’t hold a sign or carry a badge. In fact, they don’t even claim to be heroes. Yet, we know otherwise by observing the remarkable outcomes as a result of the lives they saved.

Living Kidney Donors Deserve More Recognition

We believe living kidney donors deserve more recognition. The intention of this campaign is to do just that, by publicly honoring these remarkable humanitarians, as extraordinary human beings who selflessly donated one of their kidneys to end the life-threatening wait for someone in need. 

Living kidney donors are individuals who chose to donate a kidney (sometime during their lifetime) after obtaining approval from a transplant center’s medical evaluation committee. Most living donors choose to donate because they either knew someone in need or simply wanted to help a stranger. 

Witness the Miracle

Because living kidney donors choose to donate one of their kidneys while they are living,* they get to witness the miracle of their gift (and experience immense pride of accomplishment) for years to come. *Living kidney donors also retain their right to donate their remaining organs later in life. 

Just Imagine

Ever imagined what it would be like to save someone’s life or improve the quality of someone’s life by extending their remaining years- while you are still alive? Living kidney donors have transformed this dream into reality. 

In this campaign, we’re inviting real-life living kidney donors to show their proud faces, take a bow and elevate their story to help us increase awareness and inspire others to lean in this direction. Have they inspired you?

Hidden Organ Donor Facts:

The Need:  Over 109,000 end-stage kidney disease patients are in desperate need of a replacement kidney.

The Wait:  It can take 3 to 9 years to receive the gift of a kidney from a deceased organ donor on the national transplant list. Living Kidney Donation can end the wait.

The Benefit:  Kidney transplants offer a far better alternative to dialysis. The benefits include, a better quality-of-life, fewer medical complications and longer survival rates.

Match-Making:  Living kidney donors don’t have to be blood-related to the recipient. They only need to be blood-type compatible. But even then, there are Paired Exchange Programs that can offer alternatives.

Know Your (ABO) Blood-Type

Your blood-type is necessary to determine if you’ll be blood-type compatible to the person in need. You can either ask your doctor for a blood-type (ABO) test or seek a “direct-consumer” lab alternative. Direct-consumer labs allow patients to order lab tests with or without a doctor’s order. Thanks to House Bill 2645 (sponsored by Arizona Representative Heather Carter, R-Cave Creek and approved by Gov Doug Ducey) this bill now allows consumers in Arizona the ability to request basic lab tests and access results through a secure online portal.

The Opportunity:  Healthy individuals can donate a kidney while they are still living and continue to live a full life. In other words, kidney donors don’t have to wait until after they’ve passed to donate. They do, however, need to pass the transplant center’s donor qualification process in order to proceed.

Learn As Much As You Can

There’s a lot to discover when it comes to living kidney donation. That’s why we created the Top Twelve “Need to Know” Answers to the most frequently asked questions on living kidney donation. We encourage you to take the time to explore this handout. Learn more here:  See Top Twelve Questions on LKD. 

 

Nationwide effort to expand post-donation benefits to living organ donors

LIVING ORGAN DONORS RECEIVE FREE TELEMEDICINE BENEFITS TO GIVE LIVING DONORS ADDITIONAL MEDICAL PROTECTION
Healthtera, a supplemental health benefits company, that offers 24/7 telemedicine solutions powered by HealthiestYou (HY), announced the roll-out of its Living Donor Family Sharing Program to support the courageous individuals who have gave a piece of themselves to save someone’s life. This first-ever program is a nationwide effort to expand post-donation benefits to living organ donors, which allows live-donor transplant recipients (enrolled in Healthtera’s family telemedicine plan) to cover their living organ donor under Healthera’s “Family-Sharing Plan” at no additional charge.

Here’s how it works:

• Healthtera’s telemedicine subscribers can include their living kidney donor in their telemedicine benefits under their “Shared Family Plan” – at no extra charge.

• Benefits include unlimited 24/7 “on-demand” access to U.S. Board-certified physicians (via telephone, online or mobile app) for medical consultation and medically necessary pharmacy prescriptions.

• The monthly subscription fee for a transplant recipient is $18/month, which covers up to 10 family members total.

• This plan includes unlimited sessions with physicians and there are no deductibles or copay’s.

Of course you don’t have to be a transplant recipient to subscribe to telemedicine. Most people enroll for access to physicians after-hours or when traveling, during holidays and over weekends. This program can eliminate the need to wait days for an appointment for a basic need. It can eliminate the need to go to urgent care for most basic needs.

The TransplantFirst Academy (TFA) with Healthera’s principals, shared our founder’s story and vision to expand coverage to transplant recipient subscribers who would like to include their living organ donor in their family plan. This ground-breaking concept was approved and now recognizes living organ donors as life-saving health-heroes who deservedly qualify for coverage under their transplant recipient’s “Shared Family Plan.”
TFA feels it was a privilege to have played a small role in influencing this unprecedented expansion of benefits for non-related living donors.
They invite you to spread the word about this unique “extra layer of protection” that now allows organ transplant recipients to consider having for themselves, their families and their selfless health-heroes, their living kidney donors.

View Billboard Campaign to Honor Living Kidney Donors Here: 1kidney.org

Learn more here: http://finance.yahoo.com/news/living-organ-donors-receive-free-162700941.html

Living Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan
Living Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan

Living Kidney Donor Tribute Inspires Followers

Melissa.Billboard.UP.2

Melissa Blevins Bein is honored on theTransplantFirst Academy’s Living Kidney Donor “Tribute for Awareness” Billboard Campaign, in downtown Phoenix during the week of Christmas 2015 – The ultimate gift. Want to get more billboards up? Make your contribution: https://www.theproactivepath.com/campaigns-projects/

TransplantFirst Academy hopes to make a difference by raising community awareness of living kidney donation. Recently, TransplantFirst Academy urged Phoenix Mayor Greg Stanton to approve a proclamation in honor of living kidney donors for their brave gift. The proclamation was approved to be recognized throughout the month of January.

“Most healthy individuals don’t realize that they can donate one of their kidneys and make an immediate impact on someone’s life,” said Risa Simon, founder and CEO of TransplantFirst Academy. “The mayor’s proclamation combined with our billboard campaign, a tribute showcasing real-life living kidney donors, aims to expand awareness.”

“Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. Their decoration of a few tiny scars is a unique distinction of lifetime achievement for the role they played in saving lives.”

Living kidney donation is not for everyone. It takes a very special and healthy person to qualify. Simon added, “Kidneys are hard to come by and our nation’s deceased organ supply simply cannot meet the demand. We hope that our billboard campaign makes people aware that they can make an impact now, not just after they are deceased.”

TransplantFirst Academy’s billboard campaign goal is simple:
1. Honor living kidney donors for saving more than 132,160 lives (2,834 lives in Arizona) as of December 25, 2015.
2. Capture community attention that ignites interest in living kidney donation.
3. Save lives by ending the life-threatening wait for those in need.

As a passionate patient advocate and preemptive transplant recipient, Simon said, “When my living donor stepped forward on my behalf, I received more than a highly functioning kidney. I received a sense of duty to advocate for all those facing this reality.”

About TransplantFirst Academy:
TransplantFirst Academy is a 501c3 non-profit organization based in Phoenix, Ariz., dedicated to empowering and improving kidney patient outcomes. For more information, visit transplantfirst.org. To become a sponsor or request an interview, contact Risa Simon at 480-575-9353 or risa@www.theproactivepath.com.

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