© 2022 Simon Says Seminars, inc.| TransplantStrong

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

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

Feeding Covid’s Silver Lining

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

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

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

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

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

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

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

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

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

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

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

Your thoughts and intentions matter.  Use them wisely.

 

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

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

Extending Transplant Immunosuppression Coverage Saves Money

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

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

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

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

Your voice can help extend immunosuppressive drug coverage.

Learn more now. Join Honor the Gift Campaign 

Celebrating New Law for Organ Donor Protections in Arizona

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

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

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

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

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

Love is in the Legislative Air for Living Kidney Donors

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finding kidney donors

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

Living Kidney Donors Day

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

New! AZ Living Kidney Donor Protections –SB1100

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

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

New! FMLA Protections are Extended to Living Organ Donors 

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

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

Live-Donor Champion Programs

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

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

SB1100 Fact Sheet 

For more information, contact Risa Simon

Risa@TransplantFirst.org

Understanding Living Kidney Donation

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Understanding Living Kidney Donation

1. Who Can Be A Living Kidney Donor?

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

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

The Surgery:

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

Risks:

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

Hospital Stay:

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

Discomfort:

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

Work & Activities:

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

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

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

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

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

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

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

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

6. How Successful Are Living Kidney Donor Transplants?

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

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

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

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

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

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

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

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

What About Advanced Donation (ADP)?

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

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

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

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

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

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

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

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

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

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

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

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

Back-Up Donors Are Important Too!

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

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

How Do Living Kidney Donors Positively Impact Their Recipients Life?  

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

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

2. Kidney Donors Offer A Better Match:

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

3. Kidneys From Living Donors Function Better:

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

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

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

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

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

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

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

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

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

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

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

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

 

 

CLICK BELOW TO ORDER PAPERBACK BOOK: 

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

Kidney Donors Get Job Security

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

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

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

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

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

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

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

Cultivating The Good Life After Transplant

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Life After Kidney Transplant

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

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

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

Keeping Yourself Safe & Out of Harm’s Way

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

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

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

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

Medication Management

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

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

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

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

  • Anxiety
  • Stress
  • Frustration
  • Guilt

Talk About Your Feelings 

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

Connecting With A Mentor

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

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

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

Get Movin’ & Groovin’

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

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

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

Secure Your Quality of Life

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

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

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

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

Diabetes Risks

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

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

Heart Disease Risks

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

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

High Cholesterol Risks

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

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

Cancer Risks

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

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

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

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

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

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

Bone Disease

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

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

Anemia

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

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

Gout

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

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

Financial Aid 

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

Your Attitude Matters Most!

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

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

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

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

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

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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