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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/

 

Who Can Be A Living Kidney Donor

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Understanding Living Kidney Donation – How to Be One & How to Find One

1. Who can be a living kidney donor?

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

2. What’s the kidney donation surgery like? What Are the risks?

The Surgery:

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

Risks:

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

Hospital Stay:

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

Discomfort:

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

Work & Activities:

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

3. Who pays for the cost for the kidney donor’s surgery?

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

4. Can a living kidney donor live a normal life after donating?

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

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

5. What emotions might the kidney donor feel?

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

6. How successful are living kidney donor transplants?

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

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

7. How old do you have to be to donate a kidney?

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

8. What happens if I’m not a blood-type match?

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

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

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

What About Advanced Donation (ADP)?

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

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

9. What if a kidney donor changes their mind?

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

10. How will donating a kidney impact future pregnancies or my sex life?

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

11. Are kidney donors rewarded for their gift-of-life?

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

12. What’s the first step to see if I’d qualify to be a living kidney donor?  

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

During the call individuals can ask questions and get more details about the tests involved, the surgical procedure and recovery. Even if the person calling is not completely sure they want to proceed, this call can provide insight to help them decide if living kidney donation is right for them. 

All donor coordinator conversations are handled in strict confidence to ensure callers can ask questions without pressure or concern. In other words, their intended recipient will never know someone called in (or their testing status), unless the potential donor communicates directly to their intended recipient.  

Back-Up Donors are Important Too!

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

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

The Four Top Benefits for Receiving a Transplant from a Living Kidney Donor:  

1. Kidney Donors End the Wait:

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

2. Kidney Donors Offer A Better Match:

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

3. Kidneys From Living Donors Function Better:

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

4. Living Kidney Donors Give Their Recipient an Opportunity to Bypass Dialysis (or eliminate their need):

Most kidney patients need to be on dialysis (to stay alive) while they wait years for a deceased donor’s kidney for their transplant. Because of this, living kidney donors end their transplant recipients wait. They do this by allowing their intended recipient to schedule their transplant before they’d require dialysis (known as a preemptive transplant). They can also help those who are already on dialysis, by ending their continued need to be on dialysis.

Visit TransplantFirst.org for more information. 

Kidney Transplant Recipients Get New Protections!

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New Kidney Transplant Recipient Protections!

The National Kidney Registry (NKR) is now offering recipient protections in addition to their very generous donor protections that remove barriers to donation.

NKR’s donor protections (Donor Shield) offers living kidney donors reimbursement for:

  • Lost wages up to $2,000/week—for up to 6 weeks
  • Travel and dependent care—up to $5,000
  • Complications not covered by Insurance or transplant center

Donor Shield also offers “priority status” to donors in the unlikely event that they ever need a kidney transplant—and/or legal support if the donor finds themselves dealing with job loss or discrimination.

But wait, there’s more!

RECIPIENTS who receive a kidney from NKR’s voucher or paired exchange are now protected should their transplanted kidney fail to function.

That’s right! Recipients now get Recipient Shield protections if their transplanted kidney fails to function within 90 days. Recipient Shield provides recipients with “priority status” to receive another kidney from NKR, providing the recipient’s “failure to function” notification was reported to NKR within 90 days.

Learn more here: https://www.kidneyregistry.org/

Biden signs bill introducing more competition to US’ organ transplant network

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On September 22, 2023, President Joe Biden signed a bipartisan bill into law that overhauls our country’s organ transplant system by increasing competition among contractors—and paving the way for additional funding.

The new law will “break up the current monopoly system” that for nearly four decades allowed a single private nonprofit to be the sole contractor managing the country’s Organ Procurement and Transplantation Network (OPTN), White House press secretary Karine Jean-Pierre told reporters Friday.

“Everybody knows the system has been broken for years, with heartbreaking consequences,” she said in reference to the more than 100,000 Americans awaiting a transplant at any given time. “Now, with the president’s signature, we are taking significant steps to improve it.”

The Securing the U.S. Organ Procurement and Transplantation Network Act stems from rising criticism of the United Network for Organ Sharing (UNOS) and the OPTN from lawmakers on both sides of the aisle. In 2022, the Senate Finance Committee issued a report and convened multiple hearings focusing on the various “failures” of the system that led to long waits and deaths.

Sen. Ron Wyden, D-Oregon, chair of that committee and one of the act’s sponsors, said in a statement. “For too long, thousands of families have had to watch a loved one struggle while waiting for an organ transplant because the system has been inefficient and unaccountable. With this law, that starts to change. There is going to be accountability, know-how, and improvements so more Americans are connected with a life-saving transplant.”

UNOS, the sole nonprofit that has been managing the network, coordinating transplants and procurements and monitoring patient safety, has previously said that it welcomed any plans to reform the national system. The group on Friday said it does “not oppose this legislation” and reiterated its support of “a more competitive and open bidding process” in statements to reporters.

Read more here: https://www.fiercehealthcare.com/providers/biden-signs-bill-introducing-more-competition-us-organ-transplant-network

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

Transplant Equity—Backdating Waiting Times for Black Candidates

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Black kidney transplant candidates who were disadvantaged by previous use of a race-inclusive eGFR calculation will receive waiting time CREDIT, because they should have qualified sooner.

OPTN unanimously approves a process to improve transplant equity by backdating the waiting times of Black kidney transplant candidates who were disadvantaged by previous use of a race-inclusive calculation to estimate their level of kidney function.

Waitlisted candidates known to have been disadvantaged by a race-inclusive GFR calculation will receive all the waiting time credit for which they qualify. This action requires all kidney transplant programs to identify those Black kidney candidates whose current qualifying date was based on the use of a race-inclusive eGFR calculation, and to determine whether a race-neutral eGFR calculation shows they should have qualified sooner to start gaining waiting time for a transplant (even if their waiting time has been based on a different qualifying standard, such as dialysis).

This initiative started on January 5, 2023 and must be completed within one year. Within this time frame, all transplant programs must contact all of their currently registered kidney transplant candidates about this initiative, as well as apply to the OPTN for a waiting time modification for such candidates.  

After the programs request modifications for potentially affected candidates, they will again contact each candidate to let them know whether they qualify for a waiting time adjustment.

Transplant programs also need to document their completion of these steps with the OPTN within one year.

Learn more here:

https://optn.transplant.hrsa.gov/news/optn-board-approves-waiting-time-adjustment-for-kidney-transplant-candidates-affected-by-race-based-calculation/

Five Most Common Mistakes Kidney Patients Make & How To Avoid Them!

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Five Most Common Mistakes Kidney Patients Make & How to Avoid Them

 

Everyone makes mistakes. I’ve certainly made my share. I guess the upside of making a mistake is the powerful lesson that follows. Of course, the learning only “sinks in” when the memory of error lingers longer than the mistake itself.

Wouldn’t it be great to avoid all those unforeseen blunders long before they throw you into a tailspin of reactive, uninformed decision-making? While you can’t control everything in your life, like your kidney disease that appears to have the upper hand in this game, you could influence the outcome by being more prepared for all those unpredictable circumstances.

Below you find some golden nuggets to help you avoid the 5 most common kidney patient landmines. Incorporate these proactive behaviors and you’ll soon be on your way to becoming a more empowered patient in pursuit of your best life possible. The life every kidney patient deserves.

Mistake #1: Ignoring Your Numbers

Are you monitoring your blood pressure, weight and lab results closely, or are you relying on your doctors to translate those hard to pronounce words and jumbled corresponding values? Don’t assume you’re being told everything you need to know. As the CEO of your health, take responsibility by asking key questions and encouraging a dialogue about your numbers. Your lab values play a significant role in the progression of your disease. They also alert you to potential problems that you might otherwise not be aware of . Early insight can often increase your odds to correct potential problems.

To keep yourself well informed and proactively involved in your health— Step-Up your game a notch by following these tips:

  1. Set your digital calendar to be proactive by scheduling your lab draws at your recommended intervals.
  2. Keep an “observation diary” for tracking new and unusual symptoms (like fluctuations in BP or weight).
  3. Insist on getting a copy of your lab results in your portal (as soon as they are available). This will allow you to be “one step ahead” of conversations about any changes in your lab values.
  4. If your portal is unable to show a history of your lab values, create a spreadsheet on your own. This will allow you to plot/visualize your numbers by date, and track the history of potential problems.

While your labs can look and sound like Greek, keep your eagle eyes on these key numbers at all times.

(1) eGFR (this is an estimated number that shows how efficiently your kidneys are sifting, sorting and cleaning waste from your blood).

(2) Creatinine (the measurement that gauges your kidney’s ability to breakdown muscle cell waste.

(3) BUN (the amount of protein in your blood and urine).

Of course, paying attention to all your numbers, including electrolytes (like potassium), blood cell counts (like hemoglobin and hematocrit), and monitoring calcium, phosphate—and lipids is also very important. Watching for blood or protein in the urine must not be overlooked either. Follow these tips to more effectively partner with your healthcare team to become your own best advocate.

Mistake #2: Forgetting To ASK & TELL

If you are just showing up for your appointments without a pen and a legal pad full of questions, list of concerns—and your spreadsheets with all your number comparisons, you’re missing out on a valuable wisdom-gaining experience. When you choose to be more prepared before your doctor walks through the door, you’ll have a greater chance to engage and partner in conversation.

Here Are Your Top 3 “ASK’s”:

  1. What’s your “take” on my last labs and what can I do to impact them more favorably?
  2. Should I need renal replacement, do you think I’d be eligible for transplant?
  3. If not now, what could I do to improve my chances?

Become an inquiring mind. Never stop asking and learning.

Here Are Your Top 3 “TELL’s”:

  1. Your symptoms, observations and concerns since your last visit. (Use your observation diary).
  2. Obvious number changes. (Refer to your notes about fluctuations in your BP and weight, and identify lab value comparisons).
  3. What you’d like to see happen, along with your future desires and goals.

If initiating dialogues with you doctor is uncomfortable for you, state it as so. For example, you can say “This is a bit awkward or embarrassing for me (—or maybe even a little bit premature), but I think it’s important enough to bring up. May I share my thoughts with you?”

If you find your doctor seems distracted when you try to open this dialogue ,or just seems too rushed to listen, you might ask if it would be okay to email your thoughts following your appointment. It’s important to feel that the door has your best interest at heart and that the door is always open for discussion. Open communication is the only way to build respect and trust. If your attempts fall on flat ears, it might be a sign to get a second opinion while exploring other care providers in your network. Your job is advocate for yourself by partnering with your care providers that “get you.” You’ll never be able to achieve your goals if you feel like you’d be walking on eggshells to approach a topic. This is your life. Demonstrate you care by being a team player.

Mistake #3: Waiting To Get Sicker

If you’re waiting to get sicker before you get serious about your future, you could be in for a rude awaking. Open your eyes to what someday could be the inevitable. Look at it this way, “It’s not a matter of if you’ll ever develop renal failure, it’s a matter of experiencing failure of a different kind. Failure to do something (i.e.; seize opportunity) while you still can.”

When you don’t have all the particulars, it is easy to think that you have more time than you actually have. This is an illusion. Try using what I call the “side-view mirror approach”  from your car. What’s that warning on your side view mirror? It encourages you to be mindful that  “Objects in the mirror may be closer than they appear.”  This can be very true for the progression of your kidney disease. Your disease may be progressing faster than it appears.

While the “if” and “when” of losing complete kidney function may still be unknown to you at this time, create an imaginary side-view mirror for yourself that reads “Renal failure may be closer than it appears.” This perception alone might just motivate you have a “ready-set-go” mindset for seizing opportunities.

The Chinese symbol for crisis combines figures depicting both danger and opportunity. We can learn from this by embracing each precarious situation as an opportunity to discover a better path.

An addict waits to hit rock bottom before doing something for themselves. You don’t have to wait until you hit rock bottom of your health, in fact you shouldn’t. Partner up with your healthcare team to create a coalition of specialists who can support your proactive intentions. This is how you can secure your best life possible.

Mistake #4: Assuming Dialysis Comes First

Most CKD patients rarely pick transplant as their first choice, mostly because they are unaware of this opportunity—and its unparalleled value. Perhaps you thought dialysis was required before you’d be considered for a transplant? If so you’re not alone, yet know we hope you know that belief is untrue.

In the United States, less than 20%* of transplants are performed preemptively (before the need for dialysis). If there’s a chance that you could be a transplant candidate, you’ll need to proactively work a plan to attract potential live-kidney donors. If you are told you would not be eligible, be sure to verify from through a second opinion. Also, find out what you could do to change that status, like lose weight or live a more healthy lifestyle, [which are more doable than serious active infection, active malignancy, heart disease and obesity]. Learn more about restrictions, and then give it all you’ve got to become your own success story.

Mistake #5: Neglecting To Share Your Story  

Are you and your kidney disease hiding in the closet? If so, you’re not alone. I didn’t tell a sole about my condition for years. But then I realized I was doing myself and others a disservice. It takes a village to increase awareness. Your story can touch listeners heartstrings—particularly when it is shared from your heart ,and when you expect nothing in return. Listeners not only need to learn about your situation, but they also need to know the frightening realities, like more than 95,000 people are currently waiting for a kidney transplant. They also need to know that about our national organ shortage, and it’s catastrophic wait for deceased organs. No doubt your story can inspire living kidney donor offers.

Don’t think that sharing your story is pointless because if someone really wanted to help you some day they would have already told you so. This is foolish and self-sabotaging thinking. Until others truly understand your situation (and the life-threatening need), they can’t begin to imagine how they might help you (or find someone who could). It’s your duty to become a voice for all. Hope for a better tomorrow starts with you.

About The Author

As a motivational speaker, 3x published author, patient mentor, advocate and industry consultant, Risa has one goal: To empower kidney patients to become their own best advocate. Risa is the founder of Simon Says Seminars, Inc., TransplantFirst Academy, and TransplantStrong.com. You can find Risa “giving back” often as a Peer Mentor and PKD Connect Ambassador for Education with the Phoenix Chapter of the Polycystic Kidney Disease Foundation. She also serves as an advocate and peer mentor for other patient groups, including NKF’s Patient Navigators and AAKP Patient Ambassadors.

Known as a passionate role model for others, Risa used her own curiosity to carve out a more proactive path for herself and others. Now, nearly 12 years post-preemptive (live-kidney-donor) transplant later, she’s living her best life and still going strong. This is what she hopes for all transplant eligible patients. Her tips, scripts and Donor Magnet® system can be found in her books: “In Pursuit of A Better Life: the Ultimate Guide For Finding Living Kidney Donors,” and “Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients” both available on Amazon.

Her most exciting achievement can be found in her new Donor-Seeker® Program Platform.  For more information visits the links below:

www.transplantfirst.org

www.risasimon.com

www.transplantstrong.com

 

Reference: Preemptive Transplant

Racism in Kidney Care

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A simple metric that uses a blood test, plus the patient’s age and sex and whether they’re Black or not makes Black patients appear to have healthier kidneys than non-Black patients, even when their blood measurements are identical. “It is as close to stereotyping a particular group of people as it can be,” said Rajnish Mehrotra, a nephrologist with the University of Washington School of Medicine.

This race coefficient has recently come under fire for being imprecise, leading to potentially worse outcomes for Black patients and less chance of receiving a new kidney. A national task force of kidney experts and patients is studying how to replace it. Some institutions have already stopped using it. Some medical experts say fixing this equation is only one step in creating more equitable care, a process complicated by factors far deeper than a math problem.

The racial part of the equation

Buoyed by activism around structural racism*, those seeking equity in health care have recently been calling out the algorithm as an example of the racism baked into American medicine. Researchers writing in the New England Journal of Medicine last year included kidney equations in a laundry list of race-adjusted algorithms used to evaluate parts of the body — from heart and lungs to bones and breasts. Such equations, they wrote, can “perpetuate or even amplify race-based health inequities.”

Leaders in kidney care believe race modifiers should be removed, because it make black patients and their providers believe their kidneys are functioning 16 percent better than they actually are—which can lead to delayed care and limited access to more ideal treatment options.

Inaccurate race based equations cause black patients to get delayed referrals to specialist and they have to wait much longer to get on the transplant list. More specifically, it might not be that Black bodies are more likely to have more creatinine in the blood, but that Americans who experience housing insecurity and barriers to healthy food, quality medical care and timely referrals are more likely to have creatinine in their blood — and that many of them happen to be Black.

Systemic* health disparities help explain why Black patients have unusually high rates of kidney failure, since communities of color have less access to regular primary care. One of the most serious consequences of poorly controlled diabetes and hypertension is failure of the organ.

Direct discrimination — intentional or not — from providers may also affect outcomes. Studies recently published in the Journal of the American Medical Association and the Journal of the American Society of Nephrology noted that removing the race factor could lead to some Black patients being disqualified from using beneficial medications because their kidneys might appear unable to handle them. It could also disqualify some Black people from donating a kidney.

This article is an excerpt provided by Kaiser Health News and originally printed in The Washing Post, Tuesday, June 8, 2021 

*Structural, institutional and systemic racism broadly refer to the “system of structures that that have procedures or processes that disadvantage African Americans.”

 

COVID-19 Vaccine Boosters & Precautions for Transplant Patients

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

Article From Science.org/news  — 26 JUL 2021

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our professions Hippocratic oath is no longer good-enough.

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

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

By Risa Simon