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kidney transplant

Top 5 Reasons To Refer Transplant Early

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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 effect 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/

 

Let’s Cross The Finish Line—Once and For All!

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Living Donor Protection Act (H.R. 2923 / S. 1384)   

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 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

https://voices.kidney.org/ldpa/

Step 2:        Sign AAKP’s Petition (look for the header “TAKE A STAND” at link below)

http://www.votervoice.net/Shares/BAAAAA7xAE18AAwQoHc7FBA

Sponsors of this bill: 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 of TransplantStrong.com (A division of Simon Says Seminars, inc.)
For more information email: Risa@transplantstrong.com

COVID-19 Vaccine Boosters & Precautions for Transplant Patients

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While Covid-19 vaccine (3rd dose) boosters are now recommended for immunosuppressed patients—here’s the back story as to why this population finds itself more vulnerable 

Article From Science.org/news  — 26 JUL 2021

Doctors recommend that organ transplant patients continue to take precautions such as wearing a mask and social distancing even after they are fully vaccinated.

Transplant physicians have worried for months that their patients might not be getting the protection they need from COVID-19 vaccines. Studies have already shown that many organ recipients don’t produce coronavirus-fighting antibodies even after two doses of the highly effective messenger RNA (mRNA) vaccines—an indication their bodies are unable to mount a strong defense against SARS-CoV-2. A study out today indicates this lack of antibodies is indeed translating to a much higher risk of “breakthrough” cases of COVID-19 among vaccinated transplant recipients.

Immunosuppressant drugs, commonly used to keep the body from rejecting a new organ, leave transplant patients more vulnerable to infections. In a previous study involving 658 transplant recipients, just 54% of patients given two doses of an mRNA vaccine developed antibodies to protect them against the pandemic coronavirus. But antibodies are only one indication of a body’s response to a vaccine. Low antibody levels are “a warning,” says Dorry Segev, a transplant surgeon with Johns Hopkins University. “It’s a signal, but it doesn’t necessarily mean that they have suboptimal protection.”

To measure that protection, he and colleagues obtained SARS-CoV-2 infection and testing data on more than 18,000 fully vaccinated recipients of large organs like kidneys or lungs at 17 transplant centers across the United States. They found that 151 of these patients caught the virus. Of those that became infected, more than half were hospitalized with COVID-19 symptoms and nearly one in 10 died.

Although the rate of infection in the study was low, just 0.83%, it’s still 82 times higher than in the general vaccinated public—and the rate of serious illness was 485 times higher, the team reports today in Transplantation. This study provides the first clinical evidence across multiple hospitals that transplant recipients are less protected by the vaccine, Segev says.

Eva Schrezenmeier, a nephrologist at Charité University Hospital in Berlin, worries the study is actually underestimating breakthrough cases, because the patients might have gone to different hospitals to be treated for COVID-19, or might not have reported their breakthrough case at all.  “I think they might have missed some patients.”

Deepali Kumar, a transplant infectious disease physician at University Health Network in Toronto, says this is a “welcome study,” but she would like to know more about those who had breakthrough infections before drawing any conclusions. Because the study is based on summary data and not complete medical records, it can’t provide information about whether the serious breakthrough cases were in older organ recipients, or in patients who received a particular kind of transplant, she says. “There are a lot of questions remaining.”

One thing is certain, however: “We need to do a lot more to protect our transplant patients,” she says.

A potential solution: a third shot of vaccine. Kumar, Segev, and other researchers are studying whether a booster dose could give transplant recipients better COVID-19 protection.

Two recently published studies have shown promising results. In the first, published last month in The New England Journal of Medicine, 68% of organ recipients produced antibodies after a third dose of the mRNA vaccine made by Pfizer, up from 40% after two doses. In another study published last week in JAMA, doctors administered a third dose of Moderna’s mRNA vaccine to 159 kidney transplant patients who generated little to no antibodies after two doses. They found that 49% of these patients subsequently started to churn out antibodies.

Third doses are not yet an officially recommended course of action for immunocompromised people in most countries, but as more data come out, policies are shifting. The French government endorsed third doses for transplant patients in April. The United Kingdom’s National Health Service also plans to begin to offer a third vaccine dose to immunocompromised individuals beginning this fall. In the United States, an advisory panel for the Centers for Disease Control and Prevention last week evaluated recommending third doses, but likely won’t make an official recommendation until after the Food and Drug Administration offers full approval to the mRNA vaccines. [Update: FDA has approved and boosters are now recommended]

In the meantime, transplant patients should still get their COVID-19 vaccine, Segev says, because limited protection is better than none. But they should also continue to wear masks and practice social distancing, he stresses. Getting the rest of the population vaccinated is another crucial step in helping protect these patients, he adds. “This is a stark clinical reminder that transplant patients are inadequately protected by the standard vaccine series.”

Article Taken From July 26, 2021 Science.org — News

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

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

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

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

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

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

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

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

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

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

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

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

Our professions Hippocratic oath is no longer good-enough.

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

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

By Risa Simon

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

 

 

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!

 

 

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