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patient engagement

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/

 

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

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