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Living Kidney Donation

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

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

 

 

Understanding Living Kidney Donation

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Understanding Living Kidney Donation

1. Who Can Be A Living Kidney Donor?

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

2. What’s the Surgery Like? What Are the Risks?

The Surgery:

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

Risks:

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

Hospital Stay:

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

Discomfort:

Because the kidney donor will feel pain after surgery, pain medications will be provided to help patient comfort. It is not uncommon for some patients to experience constipation from pain medication. Because of this, laxatives may be provided. 

Work & Activities:

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

3. Who Pays For The Kidney Donor’s Tests, Surgery and Hospital Stay?

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

4. Can A Living Kidney Donor Live A Normal Life After Donating?

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

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

5. What Emotions Might The Kidney Donor Feel After Donation?

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

6. How Successful Are Living Kidney Donor Transplants?

Hospitals with established transplant programs show very good transplant success rates. Most transplant centers* exceed a 95% success rate one year after transplantation.

The best success rates are seen in transplants from living kidney donors. (*Transplant programs are required to keep track of their success rates. Be sure to ask the center to share their success rates).

7. Is There An Age Requirement (or Cut-Off ) to Donate a Kidney?

Generally, the ideal age range to donate a kidney is 18-65 years old. Of course, the kidney donor will need to be healthy enough to donate a kidney safely. While there have been donors who have donated a kidney after the age of 65; younger donors are preferred. Family members are also preferred, as they offer a better match.

8. What If I’m Not A Compatible Blood-Type Match?

Often times, potential donors can be incompatible in blood type or have antibodies that would fight against their intended recipient. When the living kidney donor is not an ideal match for their intended recipient they can still donate—just not directly. This is accomplished through a Paired Exchange Program.

In Paired Exchange, a computer algorithm is used to find a better match for incompatible groupings. In this model, the living kidney donor’s kidney is swapped with another person’s incompatible living kidney donor.

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

What About Advanced Donation (ADP)?

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

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

9. Am I Able to Change My Mind After I Start Exploring This Option?

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

10. How Will Donating a Kidney Impact Future Pregnancies or My Sex Life?

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

11. Are Kidney Donors Rewarded for Saving Someone’s Life?

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

12. What’s the First Step To See If I Could Be A Living Kidney Donor?  

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

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

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

Back-Up Donors Are Important Too!

If someone has been told they are not needed (at this time), but they’re still interested in donating, they can offer to be a “back-up” donor. This is invaluable, should the current donor unexpectedly change their mind or become disqualified. (Often times, it takes several potential donors to be tested before a qualified match is found).

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

How Do Living Kidney Donors Positively Impact Their Recipients Life?  

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

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

2. Kidney Donors Offer A Better Match:

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

3. Kidneys From Living Donors Function Better:

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

4. Living Kidney Donors Give Their Recipient an Opportunity to Bypass Dialysis (or Eliminate Their Future Need):

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

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

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

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

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

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

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

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

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

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

 

 

CLICK BELOW TO ORDER PAPERBACK BOOK: 

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

Kidney Donors Get Job Security

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

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

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

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

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

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

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

Living Kidney Donors Day 2018

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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

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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

Stem Cells Replacing Immunosuppressants?

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stem cells vrs. immunosuppression

Stem Cells vrs. Immunosuppression?Imagine the day when a transplant recipient could consider stem cell treatment instead of taking a lifetime of immunosuppressants to prevent rejection. Of course, the threat of organ rejection is a serious concern for those who receive a kidney transplant, and immunosuppression is needed to prevent the transplant recipient’s immune system from recognizing the donated kidney as a foreign object, with different DNA. Yet, immunosuppressants are not without risk.

While immunosuppressants are designed to prevent the patient’s immune system from attacking the donor kidney, they can also present problems. Those problems include an increased risk for nephrotoxicity, an inability to fight off pathogens, and the increased risk for diabetes, heart disease, and even cancer.

Another issue surrounding immunosuppressants is tied to the cost of the medication. Immunosuppressant medications can cost up to $14,000 every year for the rest of a kidney recipient’s life, depending on insurance coverage. Despite these negative aspects, immunosuppressants have the most common and most effective way to prevent rejection in organ transplant recipients.

Earlier this year, California’s Stem Cell Agency (CIRM) approved funding for further research and clinical trials by involving the use of stem cells to prevent organ rejection from a donor. The hope for this new research is to discover alternatives to immunosuppressants medications.

One of those alternatives is known as stem cell treatments. Stem cell treatments involve collecting stem cells from the donor’s bone marrow with the goal of introducing them into the directed kidney transplant recipient before the transplant is performed. Stem Cells Kidney TransplantStem cell treatments allow the patient’s immune system to recognize the donor’s cells and begin to adapt prior to receiving the donor kidney.

Advancements in stem cell research are shinning a hopeful beam of light on the reduced risk of rejection, fewer side effects, adverse events and costs for immunosuppressants.

 

 

Risa Simon, Founder/TransplantFirst Academy / www.TransplantFirst.org

 

Proactive Engagement Improves Outcomes for Chronic Kidney Disease Patients

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Chronic Kidney Disease

Approximately 30 million American adults have Chronic Kidney Disease (CKD), yet only 10% are aware they have it; the other 90% have no clue. Patients find themselves completely baffled when they are told they’ve lost significant kidney function without prior warning. For those who crash into renal failure, their confusion turns to outrage once they realize that an opportunity to change their fate no longer exists.

How can this life-threatening disease be missed by our healthcare system’s radar and cause such a negative impact to so many lives? The answer to that question continues to challenge most patients and providers. Aside from the fact that CKD has no recognizable signs or symptoms in its earlier stages and can go undetected for years, preventive screenings to prevent illness and identify problems stand out as the missing link.

While most healthcare organizations purport to offer comprehensive public health and preventive medicine, only a percentage actually do. Because of this, innocent bystanders forego comprehensive health screenings, nutritional counseling, medication reviews, and educational activities that empower preventive self-advocacy.

Sadly, without this focus, chronic kidney disease patients inadvertently find themselves “sleep-walking” their way to dialysis without ever realizing they could have secured a better and longer life, given the chance.

Are practitioners to blame for this diagnosis dearth? Knowing patient education and screenings require additional time and resources (a commodity most healthcare providers lack), perhaps the insurance industry and healthcare system bureaucracy are target antagonists?

One might have thought that the passage of Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), an incentive for physicians to offer more by participating in alternative payment models, would have solved this problem. Yet, chronic kidney disease specialists (nephrologists) can only participate in these models when caring for dialysis patients—something kidney patients hope to forestall or completely avoid.

Fortunately, newly proposed legislation now includes upfront payment models to improve early detection and diagnosis of kidney disease. The objective behind this admirable initiative is to provide physicians financial incentives to preventively screen, diagnose and educate their patients on how to slow the progression of their disease and secure their best treatment option.

chronic kidney disease
Payment Incentives to Influence Patient Engagement

The proposed model, known as H.R.3867, suggests a pilot program within the Department of Health and Human Services (HHS). The model proposes a per-member-per-month payment structure, which would offer nephrologists a financial well that can be utilized to provide proactive patient engagement. This is particularly helpful for “change agent” practitioners who feel stuck because they don’t have the time or staff resources to provide this type of engagement. 

In this new model, practitioners are encouraged to proactively engage their patients in shared decision-making for better outcomes. Moreover, early engagement offers an extended timeline to transplant candidates who are seeking a preemptive transplant (a transplant before the need for dialysis)—including additional time to help hopeful candidates find a living kidney donor.

Since this proposed payment structure already exists for dialysis patients, it should be a seamless act to expand on it. After all, shouldn’t the patient-centered goal be to reduce the incidence of people crashing into renal failure and requiring dialysis, rather than just managing dialysis? It could be the patient’s only chance to secure a better life. 

Undeniably, early diagnosis, education, and engagement contribute to a chronic kidney disease patient’s quality of life. Early engagement can also reduce costs for insurance companies, lower hospitalizations and re-admissions, and decrease mortality rates; all of which are vital measuring sticks for dialysis and transplant centers.

It’s time to spread the word about this life-enhancing triple-win. Talk to your elected officials and make your voice heard.

Looking for patient engagement resources (books, seminars, webinars, mentoring and coaching) to empower patients to become their own best advocate, visit: www.TheProactivePath.com and www.ShiftYourFate.com. For programs on how to help transplant candidates end their wait by finding potential living kidney donors, visit: www.TransplantFirst.org

Article Snapshot: Proposed legislation to improve early diagnosis for chronic kidney disease and offer proactive patient engagement leads to better outcomes, by offering financial incentives to nephrologists.

Become A Living Kidney Donor-Magnet-Pro

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

  1. Who can be a living kidney donor?

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

  1. What does the process involve?

The Surgery:

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

Risks:

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

Hospital Stay:

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

Discomfort:

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

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

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

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

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

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

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

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

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

  1. How successful are living kidney donor transplants?

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

  1. Does the age of the donor matter?

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

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

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

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

  1. What happens if a donor changes their mind? 

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

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

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

  1. Does a kidney donor get anything for donating?

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

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

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

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

You Can Also Offer To Be a Back-Up

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

Key Benefits to Receiving a Transplant from a Living Donor:

  1. Ends the Wait

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

  1. Offers a Better Match

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

  1. Offers Better Function

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

  1. Presents an Opportunity to Bypass Dialysis

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

 

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