Untethered Truths: The Moral Imperative Behind Preemptive Transplantation

April 22, 2020 by RisaSimon2

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

McCormick, F, Held. P, Chertow, G. The Terrible Toll of the Kidney Shortage. 2018. JASN Editorial. J Am Soc Nephrol 29:2018.
Executive Orders. Health. July 10, 2019. [website last accessed 9.29.19] gov/presidential-actions/executive-order-advancing-American-Kidney-Health/
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
Fishbane S, Nair, V: Opportunities for Increasing the Rate of Preemptive Kidney Transplantation. CJASN 13: (8) 1280-1282, 2018
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/
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
Clinician Reviews (2012). Medicare Improvements for Patients and Providers Act (MIPPA) of 2008; 22(3):5-7
Simon, R: CKD Patient Education: The Missing Link. TransplantFirst Academy. April 1, 2015. https://transplantfirst.org/ckd-patient-education-the-missing-link/
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
Tchervenkow, J., Cantarovich, M.: Is It Time to Make Renal Transplanation Referral Mandatory? Transplantation. Feb 2020, Vol 104, Issue 2: 233-234
Lentine K, Mandelbrot D: Addressing Disparities in Living Donor Kidney Transplantation. Clin J Am Society of Nephrololgy 13: 1909-1911, 2018
Nadler, J., Beutler, H.R-1224. Living Donor Protection Act of 2019. 116^th Congress (2019-2020). [website last accessed 9.29.19. https://www.congress.gov/bill/116th-congress/house-bill/1224/text

Understanding Living Kidney Donation – How to Be One & How to Find One

October 24, 2018October 23, 2018 by Risa Simon

1. Who can be a living kidney donor?

Most people in good health can be considered for testing to see if they’d qualify to become a living kidney donor. The qualification process typically begins with a 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.

2. What’s the kidney donation surgery like? What Are the risks?

The Surgery:

The surgery is performed with small incision, which is known as 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) can include 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 for donating a kidney usually involves 1-3 overnight stays. Hospital discharge is determined by the donor’s health and their ability to get out of bed and walk on their own.

Discomfort:

Because the kidney 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. Because of this, laxatives may be provided.

Work & Activities:

Most living kidney donors can resume their regular activities within 3 weeks after donation, providing they are less strenuous activities. Depending on the type of work the kidney donor performs and the level of difficulty, kidney donors can often go back to work within 3-5 weeks. If the donor’s job is a desk job, they can often get back to work even sooner. Those engaged in more strenuous activities are advised to refrain from difficult physical tasks until they are completely recovered.

3. Who pays for the cost for the kidney donor’s surgery?

The medical insurance covering the individual who receives the donor’s kidney will cover the donor’s medical costs. Things that are not covered or paid for (by the transplant patient’s insurance company) can include the donor’s time off from work, recovery care 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.

4. Can a living kidney donor live a normal life after donating?

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 their extraordinary act of human kindness.

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. Likewise, kidney donors do not need to follow a special diet after they are discharged from the hospital. They are, however, asked to avoid alcohol while taking pain medication. The guideline for alcohol consumption after kidney donation is fairly standard. Living kidney donors should be responsible and consume alcohol in moderation.

5. What emotions might the kidney donor feel?

Like any new experience, donors can often feel both excitement and anxiety from time to time. Typically, the more the donor understands going into the process, the less anxiety they’ll experience. Post-surgery, donors often report a feeling of honor and joy. As a result, their uplifting attitudes have been found to reduce post-surgical pain, while also boosting perceptions of recovery inconveniences.

6. 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).

7. How old do you have to be to donate a kidney?

Generally, the ideal age range to donate a kidney is 18-65 years old. Of course, the kidney donor will need to be 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.

8. What happens if I’m not a blood-type match?

Often times, potential donors can be incompatible in blood type or have antibodies that would fight against their intended recipient. When the living kidney donor is not an ideal match for their intended 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.

There is also something known as Compatible Pairs, where a donor and patient that are biologically compatible (but want to find a better match through a paired exchange swap) agree to be matched with more suitable donors to increase the chance that the transplanted kidney will function better and last longer.

What About Advanced Donation (ADP)?

Advanced Donation, also known as ADP, offers a unique kidney paired exchange opportunity, separated in time.

There are four types of ADP cases. 1) Short term cases, where the intended recipient is on dialysis or is in imminent need of a kidney transplant. 2) Short Term Swap Saver, where the paired donor proceeds with donation to keep the rest of a swap on schedule, but the recipient remains in imminent need of a kidney transplant. 3) Voucher cases, where the intended recipient is currently not in need of a kidney transplant, yet they may need a transplant in the future; and the 4) Voucher Swap Saver, where the donor proceeds with donation to keep the rest of a swap on schedule. This occurs after their intended recipient is transplanted by kidney from another living donor or a deceased donor.

9. What if a kidney donor changes their mind?

Potential donors are able to change their mind about moving forward before or after they’ve been approved. When this is the case, the reasons for donor disqualification are kept confidential. The donor’s intended recipient will only be told that the donor was not an ideal candidate, (just as they would if the donor was not medically suitable for donation). To ensure donor privacy, the transplant center does not share the reason as to why a donor was disqualified.

10. How will donating a kidney impact future pregnancies or my sex life?

Donating a kidney has not been 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. However, a donor can engage in sexual activities after their incisions have completely healed and they feel comfortable enough to do so.

11. Are kidney donors rewarded for their gift-of-life?

Legally, there can be no payment given for a kidney donation. There is, however, a high value of perpetual joy that comes with saving someone’s life. Most donor’s say they never expected a financial reward. They have also said that the pride and joy they receive is priceless. Some donors have even called their kidney donation their own “Mount Everest.” Living kidney donation is a very personal experience. Because of this, not everyone can qualify to be a living kidney donor. While potential donors don’t have to be a the bravest and most heroic people on earth to consider living kidney donation, they’re dubbed as heroic, world-class humanitarians for life, post-donation.

12. What’s the first step to see if I’d qualify to be a living kidney donor?

If you know someone in need of a kidney transplant, the first step would be to call the kidney patient’s designated transplant center to schedule a telephone screening. If you don’t know someone in need, and want to donate altruistically, simply contact a transplant center near you.

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. In other words, their intended recipient will never know someone called in (or their testing status), unless the potential donor communicates directly to their intended recipient.

Back-Up Donors are Important Too!

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 “back-up.” This is important, should the intended donor unexpectedly change their mind or become disqualified. (Often times, it takes several potential donors to be tested before a qualified match is found).

Even after the surgery, when back-up donors are no longer needed, they can consider helping someone else. They can do this as an altruistic donor, or participate in a Paired Exchange to help several people by becoming the missing link in the chain.

**The Four Top Benefits for Receiving a Transplant from a Living Kidney Donor:**

1. Kidney Donors End the Wait:

A kidney from a living donor “Ends the Wait” for those in need of a kidney transplant. The surgery can also be scheduled when the kidney patient needs it most—and before the recipient’s health declines to a point of permanently losing their transplant eligibility.

2. Kidney Donors Offer 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 their transplant recipient.

3. Kidneys From Living Donors Function Better:

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

4. Living Kidney Donors Give Their Recipient an Opportunity to Bypass Dialysis (or eliminate their need):

Most kidney patients need to be on dialysis (to stay alive) while they wait years for a deceased donor’s kidney for their transplant. Because of this, living kidney donors end their transplant recipients wait. They do this by allowing their intended recipient to schedule their transplant before they’d require dialysis (known as a preemptive transplant). They can also help those who are already on dialysis, by ending their continued need to be on dialysis.

Are You A Person in Need of A Kidney Transplant?

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THIS BOOK WILL GET YOU THERE!

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Cultivating The Good Life After Transplant

May 5, 2018May 2, 2018 by Risa Simon

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

Living Kidney Donors Day 2018

April 17, 2018April 10, 2018 by Risa Simon

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

April 17, 2018April 10, 2018 by Risa Simon

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:

https://www.cdc.gov/ncbddd/heartdefects/howtheheartworks.html
https://www.niddk.nih.gov/health-information/kidney-disease/kidneys-how-they-work
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.
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 .