A Non-Profit 501c3 Kidney Patient Empowerment Organization

Top 5 Reasons To Refer Transplant Early

According to Mayo Clinic, physicians should refer kidney patients for transplant when their GFR reaches 25 to ensure they are evaluated and listed in a timely fashion. The goal is get patients evaluated before their condition worsens, and ultimately avoid complications from dialysis that could affect transplant eligibility. (Excerpts taken from: https://www.mayoclinic.org/medical-professionals/transplant-medicine/news/top-5-reasons-to-refer-a-patient-early-for-kidney-transplant/mac-20575082).

Late Referrals:

1. Force transplant eligible patients on dialysis. Dialysis leads to a significant decline in the patient’s quality of life—and increases risks for infections, anemia and cardiovascular events such as stroke, heart failure and myocardial infarction.

2. Sabotage transplant opportunities as the patient’s health and independence declines, triggering disqualifying co-morbidities.

3. Rob eligible transplant patients from vital education that would otherwise prepare them for proactive self-advocacy, and a timely listing for the best outcome.

4. Stretch out “evaluation timelines” and disrupt the likelihood of underlying medical conditions getting evaluated beforehand.

5. Lead to unrealistic timelines for finding suitable living kidney donors. Much of this is due to poor education, and a lack of preemptive (live-donor) awareness and encouragement.

There are several resources available to help patients attract living kidney donors who can help them avoid (or eliminate the need) for dialysis. One such resource is the “Donor Seeker,” which inspires hopeful recipients talk-up, team-up and learn how to share their story to attract interested donors in less than 15-minutes.  “Donor Seeker” is a free download from Android and Apple app stores. Learn more here: https://transplantfirst.org/donor-seeker-how-to-find-kidney-donors/


Story Videos ( Share Your Story in Video)

If you hesitate to talk about your need for a living kidney donor there is an engaging social media concept you can consider. It involves the use of story videos. Story Videos are a great way to get your story out there with more than just words. They offer facts and attention-grabbing visual content.

It has been said that people remember 95% of what they watch in a video and only 10% of what they read in text. This is what makes informative story videos so powerful. You can either make your own story video or have them professionally produced and customized.

Social Media Story Videos

Do you need to get your story out in social media so more people know that you are hoping to find a living kidney donor for your much-needed transplant?  Here’s your chance to get a professional video produced with your name and contact information for you and your transplant center.  

Our video producer has walked a mile in your shoes. All you have to do is answer a few questions and we’ll create the content to educate and inform your viewers from the moment they click “play.”  In less than less than 3 minutes they’ll understand your need and know how to help if they choose to do so.

Video Not Your Thing?

No worries. We’ve done the heavy lifting for you. You can get a semi-custom video for a fraction of the cost you’d have to pay to hire a professional videographer to create and edit. Check out our example below—to see how story videos can be your best outreach tool for sharing your story.

Here’s what you’ll get:

Your customized video will include:

  • ‘Ready-to-Post’ 2-minute inspirational video 
  • Your name and contact info will be included, along with your transplant center’s and applicable links
  • Facts on the value of living kidney donor transplants — and the hardships of dialysis 
  • Your urgent need for a transplant, and the risks involved in waiting for a deceased donor’s kidney 
  • An invitation to learn more, share your video in social media — and expand your search 

Don’t waste another minute waiting to see what comes next.

Start networking your story with a professionally produced video about your story and need.

Become a Donor-Magnet® by posting your story video and start attracting potential donors!

Discover more about story videos at this link: https://transplantfirst.org/story-videos/

Your Ideal Donor is Out There!

Talking about your hope to find a kidney donor can be overwhelming. With your own story video you aren’t faced with having to build up the courage before sharing your story. Your video does that for you. Viewers can either respond or simply share your video in their network to expand your search. *Depending on your social network, you can get 100’s of eyeballs within just a few hours.

Discover more about story videos at this link:  https://transplantfirst.org/story-videos/

You can also discover more about our revolutionary “Donor Seeker” mobile app for English & Spanish “how to” videos and powerful resource links here: https://transplantfirst.org/donor-seeker-how-to-find-kidney-donors/

Living Donor Protection Act 2024 – H.R. 2923/S. 1384 (2023-2024),

After Five Attempts to Pass, Let’s Make This Year Our Last!
When life gives you a 2nd chance, you want to make it count. I’ve been chipping away at this goal ever since I received my preemptive kidney transplant from an unrelated living kidney donor 13 years ago. Yet, as I advocate to increase preemptive transplant opportunities and create patient engagement programs for transplant centers, allied partners, and various organizations—all my efforts seem to pale in comparison to the truth that remains.
More than 178,000 (and counting) living kidney donors are inadequately protected.
Living kidney donors are brave and selfless souls who offer great promise for a better and longer life. The life I now live. But what assurances do they get for being our life-saving heroes? Many of us believe living donors deserve far more guarantees. Allow me to point out the inequities below:
Inequity #1: Living kidney donors put their life at risk to save the life of another without personal or financial benefit, or future protections.
Inequity #2: Living donors risk insurance discrimination by potentially being denied coverage for life, disability, and long-term care insurance. They can also have their coverage limited (or charged at a higher rate) just because they’re a living donor.
According to a study published in the American Journal of Transplantation 25% of living donors had trouble getting life insurance. They were denied, charged more, or told they had a “pre-existing” condition. *If there is any “pre-existing” condition to be considered, it should be their rigorously tested (and proven) health record that qualified them for donation.
Inequity #3: Living donors lack job security. They need assurances that their job will still be there when they return from taking time off for donation or recovery.
The Solution: The Living Donor Protection Act (LDPA)—currently known as H.R. 2923/S. 1384 (2023-2024), was designed to course-correct these barriers to donation by educating donors about these protections against insurance discrimination and job loss.
To that end, the passing of this bill would honor and protect living donors from both current and future discrimination when applying for life, disability, and long-term care insurance. By doing so, they cannot be denied, cancelled, or refused issue—and their premiums cannot increase solely based on the fact that they’ve donated an organ.
Additionally, this bill calls upon the U.S. Department of Labor to codify organ donation and recovery as a covered classification under the Family and Medical Leave Act of 1993 (FMLA). It also calls on the Secretary of Health and Human Services to educate the public on the benefits and risks of living organ donation.
The Urgent Call: Countless lives are lost each year this bill doesn’t pass. Annually, this equates to more than 8,600* waitlisted kidney patients losing their chance for ever getting a kidney transplant, because they either became too ill or died while waiting for a deceased donor’s kidney. *
*Looking back to the first year we tried (and congress failed) to pass protections for living organ donors (2013-2014), the number of casualties has increased 10-fold. If we only count the years we have been advocating for change, our nation’s organ shortage has impacted nearly 90,000 kidney patient lives—and it’s on course to only get worse. That is, until we educate the public on living donation and remove critical barriers.
Increasing & Protecting Living Donors
Living kidney donation is the preferred alternative to the long wait for a deceased donor’s kidney. Getting a kidney from a living donor not only shortens the wait—kidneys from living donors do better and last longer.
Undoubtedly, more people would consider live donation if there was more public awareness and education about the procedure, recovery and risks—and specific protections were offered (and better known) before donation. The passing of LDPA 2023-2024 would make this so.
Granted, this bill may not include everything living donors deserve, like life insurance against the risk of death or long-term disability for health effects as a result of donating an organ, or medical expense reimbursement for long-term follow up care. Nonetheless, it’s an incredibly important step forward.
You would think with bipartisan support throughout the years (i.e., 2014, 2016, 2017, 2019 and 2021), and support from transplant professionals, nephrologists, kidney patients, transplant recipients, living organ donors, and even the insurance industry, it would have passed into law by now.
This Is Our Sixth Attempt. Let’s Make It Our Last.
We need your voice to encourage legislators of the 118th Congress to support H.R. 2923/S.1384 (2023-2024) and move it across the finish line by signing it into law—once and for all. It’s not just the right thing to do. It’s a moral duty way past its time.
We need your voice to encourage legislators of the 118th Congress to support H.R. 2923/S.1384 (2023-2024), to get it across the finish line and signed into law—once and for all.
It’s not just the right thing to do. It’s a moral duty way past its time.
Take Action Now!
Step 1: Use this link to send a letter to your U.S. Representatives
Step 2: Sign AAKP’s Petition (look for the header “TAKE A STAND” at link below)
The Living Donor Protection Act (H.R. 2923 / S. 1384) – 2023-2024 is sponsored by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), and Representatives Jerrold Nadler (D-NY), Troy Balderson (R-OH), Jim Costa (D-CA), John Curtis (R-UT), Diana DeGette (D-CO), Mariannette Miller-Meeks (R-IA), Gregory F. Murphy, M.D. (R-NC) and Lisa Blunt Rochester (D-DE)
Article written by Risa Simon, Founder TransplantFirst.org, and TransplantStrong.com (A division of Simon Says Seminars, inc.). For more information contact: Risa@transplantfirst.org

Transplant Costs vs Dialysis

The Living Kidney Donor Support Act would benefit tens of thousands of Americans and save billions of tax dollars.
This organ shortage is costly to the people who end up waiting longer for transplant or who die awaiting one, and to taxpayers who pay most of the health care costs of people with end-stage kidney disease.
Transplants cost $133,000, and immunosuppressant medications cost $25,000, while dialysis costs $90,000 a year. That means that in Year 1 the government pays $133,000 per transplant and $25,000 for immunosuppressants —but stops paying dialysis costs. For the next nine years, it continues paying for immunosuppressants instead of dialysis, realizing $65,000 in savings each of those years the patient is not on dialysis. In essence, transplant costs would be paid off in two years and produce eight years of savings, or just over $500,000.

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

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 To Boost Preemptive Kidney Transplants

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.  

 

 

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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

Understanding Living Kidney Donation

Top 12 FAQ’s: 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 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.  

Benefits of Receiving a Transplant from a Living 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):

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).

Are You a Kidney Patient Hoping to Find a Donor?  

Need 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 just thinking about that unimaginable “ask” causes you to shudder? 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 shows 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 attract 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 “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! Get yourself a eBook copy today!

 

Order eBook Below:



 
 
 
If you prefer a Paperback book, link here:

Kidney Donors Get Job Security

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

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

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

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

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

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

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

Living Kidney Donors Day 2018

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

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

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

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

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

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

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

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

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

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

About TransplantFirst

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

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AST Releases Live Donor Toolkits

living donor toolkit

Are you (or someone you know) contemplating the possibility of becoming a living kidney donor? If so, the American Society for Transplantation (AST) just made your discovery process a lot easier. This just released, the first-ever, Live Donor Toolkit for individuals who want to learn more about living organ donation. From cost worksheets to medical implications, you’ll find it all and more in this comprehensive guide.

Living Kidney Donor Toolkit
The American Society of Transplantation Offers Medical & Financial Information.

This one of a kind toolkit was created to help interested individuals navigate complex questions surrounding financial and medical considerations involved in living kidney donation.

While a reassuring 97.5% of live organ donors say they would donate again if they could, it’s important to learn as much as you can about living donation before considering this extraordinary gift of life.

There are potential medical, psychosocial, and financial impacts associated with donating an organ. That said, interested donors need access to that information, and the best way to provide it would be in a centralized educational format. This toolkit does that and more.

AST’s educational toolkit was created specifically to improve the availability and delivery of quality education for those considering live donation. It was also created to expand living donation messaging to reach those who might consider live donation if they knew more about it. Additionally, this toolkit offers educational content that can be used across the transplant community. 

Described as being housed under two umbrellas, the Live Donor Financial Toolkit and the Live Donor Medical Impact Toolkit offer 10-15 stand-alone chapters each. As an added bonus, the Medical Impact Toolkit includes chapters written for both provider-level and patient-level comprehension.   

Here’s a sample list of chapters in the Medical Impact Toolkit:

  • Hypertension in the Living Donor
  • The Obese Kidney Donor
  • The Living Donor Who is at Risk for PKD
  • Donor Surgery – Post-op Complications
  • What is the ESRD Risk for Living Donors
  • Psychosocial Risks of Living Kidney Donation
  • Pregnancy Outcomes after Live Kidney Donation
  • Living Donation in Paired Exchange 

Here’s a sample list of chapters in the Financial Toolkit:

  • Lost wages due to recovery time
  • Missing work from the evaluation
  • Using up vacation, holiday, and sick days
  • Concerns that the employer might not support a person’s absence from work
  • Transportation for testing, surgery and follow up care
  • Travel, meals and lodging expenses  (out of town donors)
  • Related caregiver, child care, elder care, pet care costs during recovery

Click on the toolkit image below to learn more: 

Information Toolkit For Living Donors
AST’s Live Donor Toolkit Navigates Financial & Medical Questions Regarding Living Kidney Donation

 

 

 

 

 

 

 

For more information on how to share your story, increase need awareness and potentially meet individuals who might be interested in learning more about living kidney donation and/or becoming a living kidney donor for someone in need, visit: www.findingkidneydonors.com

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