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Should A Parent Accept A Kidney From An Adult Child or Loved One?

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Most parents (or those in need of a kidney transplant) are often reluctant if not strongly opposed to accepting a child’s (or loved one’s) kidney donation. Ironically, adult children and family members already make independent decisions on their own, yet reluctant parents don’t seem to see it that way.

Parents are wired to protect their children. That said, they often feel accepting a kidney from a child is incongruent to their parental oaths and responsibility to keep their loved ones out of harm’s way.

Oddly enough, most parents don’t put themselves in their children’s (or loved one’s) shoes and therefore don’t view their objections as hurtful or harmful.

Parents need to be guided so they can see their opposition to accepting the gift of life from a child is actually hurtful. The hurtful part comes into play when the parent robs the child of joy and psychological gain, which they’d receive from helping a beloved parent live a better and longer life.

To balance perceptions, create a reverse scenario for the parent to ponder. Ask the parent if they’d ever consider donating a kidney to their mother or father if they were in need. Chances are, you’ll hear a resounding “Of course, I would!”

When this is the case, present 2 follow-up questions:

  1. How would you feel if your mother or father disallowed you from trying to save their life?
  2. Could you live with the memory of being prohibited from saving, enhancing or extending your parent’s life?

Putting the shoe on the other foot often allows parents to reframe their need to dishonor their child’s wishes. And, while protecting a child’s medical safety by prohibiting donation, it actually hurts their emotional and physiological health for years to come.

Let’s face it. The child wasn’t asking for approval. They were simply stepping up to serve. Their desire to help is merely a reflection of the loving values their parents taught them –family first, always.

We often forget that the gift in giving is not in the receiving, but rather the joy one receives from the giving. No one should have the power to take that away from the giver.

Donors have said, “If my recipient refused my offer, I’d be robbed of a blessing.” It’s not the receiver’s call to accept or decline. That’s the transplant centers’ job.

So, the next time you hear a parent in need of a kidney transplant refuse to accept one of their children as a potential donor—or anyone refuse to accept a kidney from a loved one—read this article to them, or better yet, print it off and hand it over with endearing smile.

Author: Risa Simon, 2010 (live-donor) preemptive kidney transplant recipient, motivational speaker, inspirational author, patient mentor/advocate and founder/CEO of Simon Says Seminars, inc., TransplantFirst Academy, TransplantStrong, and the Donor-Seeker® Program. For more information contact: risa@transplantstrong.com  or visit: www.TransplantStrong.com

 

 

Untethered Truths: The Moral Imperative For Preemptive Kidney Transplants

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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—and due to that delay, they miss their opportunity to secure a preemptive (before dialysis) transplant.

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.  Sadly, the lion’s share of ESRD patients will never actualize a transplant (before they need dialysis), because they were overlooked as potential transplant candidates.

Dialysis conversations are often presented as the first line treatment—with little, if any mention to it being less desirable than transplant.   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 opportunities until they’ve started dialysis. Very few patients realize the consequences of postponing transplant could lead to less favorable outcomes. It can also jeopardize candidacy, and even shorten their lifespan.

ESRD patients deserve to know the untethered truths about their options and be encouraged to secure their best quality of life. Alarming statistics about dialysis associated infections and life-threatening comorbidities must also be better known to help patients make more informed decisions.

Statistics matter too. 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 of what patients need to know before saying yes to dialysis.2

While critical facts are not easy to share, professionals must disclose these facts to help patients gain full transparency in informed consent. This practice can encourage eligible patients to proactively set goals to secure a transplant before they require dialysis. When best practices are timed appropriately, patients can engage in a more proactive manner.

Kidneys from Living Donors

Kidney transplants performed with a kidney from a living kidney donor (LKD) can offer a multitude of benefits. Some of those benefits include the transplanted kidney responding quicker, functioning better and lasting longer than those transplanted with kidneys from deceased organ donors.

LKDs also offer their recipients a fast track to transplant, by allowing them to schedule their transplant closer to their time of need. This is key, as recipients can often bypass the need for dialysis, which opens the path to preemptive kidney transplantation, or PKT.

From quality of life to better survival rates, less medical complications and reduced depression, PKT can offer recipients a better and longer life. The PKT advantages allow recipients at a more productive role in society, return to their jobs quicker, and stay employed longer. Preemptive recipients can also enjoy more time with family and friends.

From a financial perspective, getting a 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 preemptive transplant is severely underutilized.2 It is time to expose 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.

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 beyond deafening. It’s become 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 level of urgency as a life-threatening condition, 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.

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, curriculums 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.

The bright side for those who either can’t (or choose not to) move forward, is seen in their willingness to expand the search for more potential donors. 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 can go over like a lead balloon. Understandably, parents, spouses and adult children are wired to protect their loved ones. This is where education becomes key. Support is best gained when supporters know more about the process. This includes the degree of risk, timing of recovery and their potential role in caregiving.

The amount of time a donor must take off work for testing, surgery and recovery can also squelch a donor’s intentions. Having to take a minimum of 3 weeks off (for recovery) can put job security at risk, not to mention a heavy financial burden into play when it’s taken without pay. It only gets worse when the donor is up against out of pocket travel expenses—and costs for dependent, elderly and pet care while they’re recovering.

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 2021.11,12 (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.  

 

 

Click on the PDF icon to download this article in PDF format, complete with article references

 

About the Author

Risa Simon is the founder and CEO of Simon Says Seminars, inc., TransplantFirst Academy and TransplantStrong. As an immensely grateful preemptive (live-donor) kidney transplant recipient, she’s giving back to empower others through her Donor-Seeker® Program, webinars,  coaching and mentoring—and 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:  mailto:risa@TransplantStrong.com

Observational Research: COVID-19 Vaccine Antibody Study for Transplant Recipients

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A new study for COVID-19 vaccine antibody testing is being led by the transplant team at Johns Hopkins. The purpose of this observational research study is to determine COVID-19 antibody levels in transplant recipients who get the COVID-19 vaccine. The study does not provide the vaccine or offer guidance as to whether or not one should receive a SARS-CoV-2 vaccine.
 
If participants have received or will be receiving a vaccine and are interested in the study, they will remotely collect blood sample (from their home) before vaccination when possible, and at sequential time points post-immunization.
Watch informative video on “What do I need to know about the COVID-19 Vaccines and Transplant Vaccine Trial?” by Terasaki Institute: https://vimeo.com/499778837/79819a9fce
Watch video on how to collect blood samples from home: https://youtu.be/PBpeAPndFKY
For more info and to enroll: https://transplantvaccine.org
Email:mtransplantvaccine@jhmi.edu

Feeding Covid’s Silver Lining

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COVID 19 is forcing transplant centers to cancel live kidney donor transplants and put “donor testing” on hold. Hopeful recipients are emotionally struggling with this disruptive and unpredictable standstill. Their thought bubbles sound like: “Will my donor change their mind? Will my GFR hold? Will I be forced on dialysis or be taken off the list as I get sicker?”

While these concerns are realistic deal-breakers, an intentional shift in perspective could reveal a brighter blessing in disguise. Why do I say this? Because putting life’s plans on hold presents an expanded window of opportunity to refine and strengthen your goals.

It’s  a matter of choice. You can sit frozen in fear or you can shift what’s beyond your control to work to your advantage.

While you might find the process a bit difficult at first, the more you see this pause as a good cause to “plan forward,” the easier it will become. For example, you can use this pause to talk to a peer mentor, attract back-up donors, fine tune logistics, and ensure surgical success (and recovery) for both the donor and the recipient.

You can also use this pause to encourage friends and family to spread your story in social media and invite potential donors to video conference with other donors to gain insight on their experience. They can also use this pause to chat with their doctors, request their ABO blood type, and recommit to health goals through patient portals or tele-medicine platforms. This pause can also be used to proactively explore “paired exchange” options should a workaround be needed.

Above all, potential donors can use this pause to educate their loved ones, minimize concerns and offer additional “soaking time” to gain a respectful understanding of their compassionate desire to save a life.

And, it doesn’t end there. Most kidney patients can benefit from a shelter at home pause. For example, CKD patients can use this pause to slow the progression of their disease by choosing healthier home prepared meals, ramping up their exercise routines, and by minimizing stressors that exacerbate blood pressure spikes.

Likewise, dialysis patients can use this pause to slip into a “less rushed” lifestyle, as they insist on infection control protocols and explore home treatment options. Transplant recipients can use this pause to be extra diligent about protecting their “adopted kidneys” through immunosuppressive compliance and by keeping themselves out of harm’s way. At this time living kidney donors can also become more mindful of their own safety. They need this reminder because their instinctive nature is to be a “giver.” Their recipients ask that they mindfully pause to ensure they put their “oxygen mask” on first—so they can stay safe and protected.

It is at times like this, when we feel incredibly vulnerable and powerless, that we are called upon to “lean in,” and virtually unite to inject positivity and hope back into the world.

Never lose sight of the fact that you are always in control of good intentions. The good news about good intentions, is that they are limitless—and spread exponentially from 6-plus feet away. That said, use social distancing to your benefit. Visualize, meditate and fill your gratitude journals with “seeds of gratitude.”

Embrace those seeds of gratitude—and send their nutrients up to feed the silver lining inside COVID’s cloud. By doing so, a bridge to a better tomorrow will be yours for the taking.

Your thoughts and intentions matter.  Use them wisely.

 

Written by Risa Simon, Founder of TransplantFirst Academy, Industry Consultant, Speaker, Author, Advocate  

For access to PDF: https://transplantfirst.org/wp-content/uploads/2020/04/Covid.FeedSilverLining.Simon_.pdf

Extending Transplant Immunosuppression Coverage Saves Money

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HHS reports a 73 Million Dollar Savings Over 10 Years, by extending immunosuppressive medication coverage for kidney transplant patients under Medicare

Kidney transplant recipients and donors reached a significant milestone with the release of new findings. On May 10, 2019, the Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation (ASPE) released an analysis that estimates extending coverage for immunosuppressive medications (for kidney transplant patients on Medicare) would save $73 million over 10 years. 

This is monumental news for the kidney and transplant community. ASPE has confirmed (through this analysis) what we’ve long known to be true—extending Medicare coverage for immunosuppressive medications would prolong the viability of transplanted kidneys while also saving Medicare money.

Let lawmakers know that you support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act—a bipartisan solution that protects and honors the organ donor’s gift and their recipient’s transplant, by extending drug coverage for the life of the transplant. Download PDF Fact Sheet.

Your voice can help extend immunosuppressive drug coverage.

Learn more now. Join Honor the Gift Campaign 

Celebrating New Law for Organ Donor Protections in Arizona

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TransplantFirst Academy (TFA) takes great pride in bringing an initiative for Living Donor Protections to Arizona’s lawmaker’s ears. Thanks to passionate sponsors, Senators Carter and Brophy McGee, and Arizona’s lawmakers who voted in support of the bill for living organ donor protections, Gov. Ducey signed SB1100 into law last week.

TFA is grateful that living kidney donors in the state of Arizona now have protections that prohibit insurance companies from denying or limiting life insurance, disability and long-term care coverage—or charging higher premiums.

“We celebrate Senator Carter’s and Brophy McGee’s dedication, and Governor Ducey foresight for recognizing the importance of removing barriers to living organ donation,” said Risa Simon, president and CEO of TransplantFirst Academy. Simon proclaimed, “Our nation’s been blessed by the selfless humanitarianism of more than 153,000 living kidney donors who have donated a kidney to save a life—3,200 of whom donated to individuals in Arizona.”

Our nation’s kidney shortage puts the lives of 97,000 people at risk every year—1,800 whom reside in Arizona. The life-threatening wait for a kidney from a deceased donor takes about 5 years. There is no wait, other than qualifying tests and an open operating room, for a living donor to save a life.

Simon says, “Living kidney donors give their recipients hope for better tomorrow by allowing them to receive their transplant when they need it—and before they get any sicker. Recipients rejoice in any and all things that honor their gift of life. This achievement is surely one of them.”

Love is in the Legislative Air for Living Kidney Donors

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finding kidney donors

As the TransplantFirst Academy (TFA) continues its advocacy projects to honor and protect living kidney donors, we’re reaching out to our local transplant community friends and partners to share some exciting policy updates:

Living Kidney Donors Day

As many of you know, our conversations over the last three years with Arizona State Representative, Heather Carter ushered in the concurrent proclamation resolution HCR 2042 to recognize Living Kidney Donor Day (LKDD). This year we will be celebrating LKDD in March from the floor of the State Senate, where we will recognize nearly 3,000 brave Arizonans who saved a life by donating one of their kidneys to someone in need. As the first state in the nation to achieve an awareness day for living kidney donors, we continue to be inspired by the handfuls of states that are following our lead. 

New! AZ Living Kidney Donor Protections –SB1100

Boosted by our LKDD victory, we’ve been using our voices to champion protections for living organ donors on a local level. Thanks to our team’s dedicated advocacy communications—and the remarkable efforts of now Senator Carter and colleague Brophy McGee, the State of Arizona Senate’s fifty-fourth legislature introduced AZ SB1100, with the goal of protecting living organ donors from unfair insurance practices.

Receiving a unanimous YES vote from the Senate floor last week, SB 1100 explicitly prohibits insurers that offer life, disability or long-term care insurance contracts from unfairly discriminating against living organ donors. These conditions include offering, covering and the price or conditions of an insurance policy based exclusively, and without additional actuarial risks, on that person’s status as a living organ donor. We consider this a huge win and invite you to join us as we celebrate this statewide victory. *Please spread the word to update living kidney donors and those considering donation.

New! FMLA Protections are Extended to Living Organ Donors 

We enthusiastically applaud the U.S. Department of Labor (DOL) decision to extend, via the full and appropriate authority of the U.S. Secretary of Labor, FMLA protections to living donors. This action protects the jobs of living organ donors and covers time off work for surgery and recovery. Thanks to strong voices from TransplantFirst Academy (TFA), the American Association of Kidney Patients (AAKP) and stakeholder allies including the American Society of Nephrology (ASN), the American Society of Transplant Surgeons (ASTS), the American Society of Transplantation (AST), the Renal Physicians Association (RPA) and multiple other kidney related organizations, the Department of labor fully understood that this policy change was of critical importance and completely consistent with the original intent of the FMLA legislative sponsors. Learn more here: https://aakp.org/press-release/labor-secretary-acosta-earns-patient-praise-organ-donor-job-protections-eve-labor-day-weekend /   

Breaking News! Following the actions of the Executive Branch to extend FMLA coverage to living donors last Fall, a new bill to provide further protections to living donors was entered this week by Senators Gillibrand and Cotton, and U.S. Representative Herrera Beutler. Our allies and organizations are front and center, working with leaders in Congress to make certain additional protections are afforded to courageous living organ donors through the strength of legislative action. Please stay tuned to join these efforts by helping these leaders pass the bipartisan Living Donor Protection Act.  

Live-Donor Champion Programs

Webinars, workshops and how-to patient empowerment resources are sure to improve patient outcomes by expanding live-donor transplant opportunities. Please help us give a big shout out to The Transplant Institute at Banner University Medical Center, for their wildly successful (standing room only) Living Donor Kidney Transplant Education Days. We are deeply moved by their drive to be the first local center to champion an informed path to live-donor transplants for three consecutive years. It was my great honor to be invited back as their guest speaker, presenting alongside their distinguished group of surgeons, nurse coordinators, and social workers. Two words: Bravo Banner!     

On this day of love and recognition, we invite you to join us to celebrate these record-setting achievements. Fittingly, we also celebrate National Donors Day today—a perfect match for Valentine’s Day observance!

SB1100 Fact Sheet 

For more information, contact Risa Simon

Risa@TransplantFirst.org

Understanding Living Kidney Donation

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Understanding Living Kidney Donation

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 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 Kidney Donor’s Tests, Surgery and Hospital Stay?

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 After Donation?

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. Is There An Age Requirement (or Cut-Off ) 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 If I’m Not A Compatible 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. Am I Able to Change My Mind After I Start Exploring This Option?

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 Saving Someone’s 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 Could Be A Living Kidney Donor?  

If you know someone in need of a kidney transplant, the first step would be to visit the kidney patient’s designated transplant center’s website to fill out a screening application. If the center doesn’t have an online application, simply call the 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.

The screening may involve questions about your health. You can also find more details about the tests involved, the surgical procedure and recovery when exploring the transplant center’s website. Even if you’re not completely sure you want to proceed with donation, this process will provide insight to help you contemplate if living kidney donation is right for you.  

All donor screen applications and conversations are handled in strict confidence to ensure your questions are answered without pressure or concern. In other words, your intended recipient will never know you’re exploring the possibility of donating until you choose to tell them directly.

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” donor. This is invaluable, should the current 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 a donor chain.  

How Do Living Kidney Donors Positively Impact Their Recipients Life?  

1. Living Donors Give Recipients the Ability to End Their Wait For A Deceased Donor’s Kidney:

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 Future Need):

Since the wait for a kidney from a deceased donor can take from 3 to 9 years or more, they must be on dialysis while waiting just to stay alive. Because of this, living kidney donors can help them end their wait for a transplant and need for continued dialysis. Ideally, when the timing is right, living kidney donors allow their intended recipients to schedule their transplant before they’d require dialysis (known as a preemptive transplant).

If You’re A Kidney Patient Hoping to Find a Donor, Read On…  

Need to find a living kidney donor for your transplant—but don’t know where to start? Have you been told to ask your family and friends, but you shudder at that unimaginable “ask?”  If so, listen up!

What if you could find a way to attract potential donors without ever having to ask anyone to give up a kidney? Well, now you can—and this book will show you how!

Whether you’re trying to avoid dialysis or end your wait for a transplant, In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors is the book you need.

Inside this book for those seeking a living kidney-donor transplant, you’ll discover:

•Conversation starters
•Key talking points
•Story-scripting strategies
•Message outreach tactics
•Enlisting networking teams for story-share
•Phrasing inspirational letters, signs & cards
•Positive mindsets for promoting human kindness

Fellow kidney patient, and author Risa Simon, understands your journey more than most. As a successful preemptive transplant recipient, she shares actionable tips and meaningful insights on how to become your own best advocate and live your best life possible. The life Risa now lives.

In Pursuit of a Better Life has been called the quintessential marketing plan for engaging in these sensitive “quality of life conversations” with care, knowledge, and compassion. This book has been described as a lifesaving “game-changer” by those who uncover its proven path to preemptive (before dialysis) live-donor kidney transplants.

So, what are you waiting for? If you want to ignite your Donor-Magnet® superpowers by putting these rarely discussed before insights into action—take your hand off the “pause” button and start reading this book!

 

 

CLICK BELOW TO ORDER PAPERBACK BOOK: 

In Pursuit of A Better Life: The Ultimate Guide for Finding Living Kidney Donors

Kidney Donors Get Job Security

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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

Cultivating The Good Life After Transplant

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Life After Kidney Transplant

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

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

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

Keeping Yourself Safe & Out of Harm’s Way

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

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

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

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

Medication Management

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

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

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

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

  • Anxiety
  • Stress
  • Frustration
  • Guilt

Talk About Your Feelings 

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

Connecting With A Mentor

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

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

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

Get Movin’ & Groovin’

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

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

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

Secure Your Quality of Life

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

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

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

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

Diabetes Risks

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

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

Heart Disease Risks

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

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

High Cholesterol Risks

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

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

Cancer Risks

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

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

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

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

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

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

Bone Disease

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

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

Anemia

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

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

Gout

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

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

Financial Aid 

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

Your Attitude Matters Most!

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

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

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

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

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