A Non-Profit 501c3 Kidney Patient Empowerment Organization

Become A Living Kidney Donor-Magnet-Pro

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

  1. Who can be a living kidney donor?

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

  1. What does the process involve?

The Surgery:

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

Risks:

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

Hospital Stay:

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

Discomfort:

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

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

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

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

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

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

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

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

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

  1. How successful are living kidney donor transplants?

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

  1. Does the age of the donor matter?

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

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

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

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

  1. What happens if a donor changes their mind? 

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

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

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

  1. Does a kidney donor get anything for donating?

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

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

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

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

You Can Also Offer To Be a Back-Up

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

Key Benefits to Receiving a Transplant from a Living Donor:

  1. Ends the Wait

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

  1. Offers a Better Match

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

  1. Offers Better Function

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

  1. Presents an Opportunity to Bypass Dialysis

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

 

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

 

Increasing Living Kidney Donor Transplants

HOW TO INCREASE LIVING KIDNEY DONOR TRANSPLANTS

THE CHALLENGE
Nearly 100,000 people are waiting on a list for their much needed kidney transplant and only 20% of the half million patients on dialysis make it to the transplant wait list. Of those, nearly 5000 die while waiting each year. It is a well known fact that transplant patients live longer and better lives at a fraction of the cost of dialysis care, yet the wait for a deceased donor’s kidney takes years.

PROPOSED SOLUTIONS
1. Encourage transplant eligible pateints to end their wait by finding potential lioving kidney donors. Provide template letter examples, outreach material samples and communication strategies in pre-transplant and nephrology practice settings. [Looking for templates, examples and samples? Visit this link: https://transplantfirst.org/finding-kidney-donors/

2. Inform patients that a transplant provides the best outcome. When providers unleash a proactive path to preemptive transplantation, eligible patients can work to AVOID dialysis.

3. Provide a more efficient and compassionate processes for donor screening and work-up needs to be implemented to avoid disinterest, frustration and change of heart.

4. Encourage reimbursement of living donor’s loss of wages and out-of-pocket expenses to eliminate financial barriers to donation.

5. Boost referrals and increase live-donor education at dialysis units and nephrology clinics. [Fact: Only 20% of the dialysis population is listed for transplant.]

6.  Increase kidney paired donation (KPD) awareness. [Only 10% of all living kidney donations are engaged in swaps, a procedure that allows best-matched donors and recipients to be paired]. Peer mentoring can support such an increase, particularly when incompatible donors are told they are not a match.

7.  Work together to help patients overcome barriers to live-donor transplant opportunities. Hemodialysis units, nephrologists and transplant center personnel must work together to build bridges to better quality of life outcomes.

Simply put: There is no excuse for not meeting these challenges.

You can help reduce the enormous wait list and needless loss of life (and suffering) experienced for those waiting on the list, by proactively engaging with your patients. Learn how to help your patients increase their odds of finding a living kidney donor here: https://transplantfirst.org/finding-kidney-donors/

Note: Considerable content in this article was excerpted from: ASN KidneyNewsOnline: Kidney Transplantation 2017 Breaking Down Barriers and Building Bridges.

finding kidney donors
Kidney transplant hopefuls role play ways in which to communicate their need for a living donor

 

Living Kidney Donors Day

Living Kidney Donor

The state of Arizona’s proclamation HCR 2019 recognizes Living Kidney Donors Day, as the first state in the nation to recognize Living Kidney Donors for their selfless humanitarianism. Of course, we owe a great deal of gratitude to Arizona Representative Heather Carter, R-Cave Creek, who teamed up with Kati Walker, media spokesperson for the TransplantFirst Academy (TFA) and proclamation’s brainchild and TFA’s founder, Risa Simon, for creating this well-deserved day of tribute.

On March 20th, we ask you to reach out and honor all living kidney donors (LKDs) who donated a kidney to save and extend the life of someone in need. LKD’s not only save lives, they give hope to who are waiting for a kidney from a deceased organ donor, which often takes 3-5 years. They also inspire ordinary people to seek extraordinary opportunities, by contributing to one of the most amazing, once-in-a-lifetime achievements available on this planet!

Living Kidney Donors Day helps us remember these humble heroes, which is important since LKD’s don’t wear a Medal of Honor or a superhero’s cape. They don’t hold a sign or carry a badge. In fact, they don’t even claim to be heroes. Yet, we know otherwise by observing the remarkable outcomes as a result of the lives they saved.

Living Kidney Donors Deserve More Recognition

We believe living kidney donors deserve more recognition. The intention of this campaign is to do just that, by publicly honoring these remarkable humanitarians, as extraordinary human beings who selflessly donated one of their kidneys to end the life-threatening wait for someone in need. 

Living kidney donors are individuals who chose to donate a kidney (sometime during their lifetime) after obtaining approval from a transplant center’s medical evaluation committee. Most living donors choose to donate because they either knew someone in need or simply wanted to help a stranger. 

Witness the Miracle

Because living kidney donors choose to donate one of their kidneys while they are living,* they get to witness the miracle of their gift (and experience immense pride of accomplishment) for years to come. *Living kidney donors also retain their right to donate their remaining organs later in life. 

Just Imagine

Ever imagined what it would be like to save someone’s life or improve the quality of someone’s life by extending their remaining years- while you are still alive? Living kidney donors have transformed this dream into reality. 

In this campaign, we’re inviting real-life living kidney donors to show their proud faces, take a bow and elevate their story to help us increase awareness and inspire others to lean in this direction. Have they inspired you?

Hidden Organ Donor Facts:

The Need:  Over 109,000 end-stage kidney disease patients are in desperate need of a replacement kidney.

The Wait:  It can take 3 to 9 years to receive the gift of a kidney from a deceased organ donor on the national transplant list. Living Kidney Donation can end the wait.

The Benefit:  Kidney transplants offer a far better alternative to dialysis. The benefits include, a better quality-of-life, fewer medical complications and longer survival rates.

Match-Making:  Living kidney donors don’t have to be blood-related to the recipient. They only need to be blood-type compatible. But even then, there are Paired Exchange Programs that can offer alternatives.

Know Your (ABO) Blood-Type

Your blood-type is necessary to determine if you’ll be blood-type compatible to the person in need. You can either ask your doctor for a blood-type (ABO) test or seek a “direct-consumer” lab alternative. Direct-consumer labs allow patients to order lab tests with or without a doctor’s order. Thanks to House Bill 2645 (sponsored by Arizona Representative Heather Carter, R-Cave Creek and approved by Gov Doug Ducey) this bill now allows consumers in Arizona the ability to request basic lab tests and access results through a secure online portal.

The Opportunity:  Healthy individuals can donate a kidney while they are still living and continue to live a full life. In other words, kidney donors don’t have to wait until after they’ve passed to donate. They do, however, need to pass the transplant center’s donor qualification process in order to proceed.

Learn As Much As You Can

There’s a lot to discover when it comes to living kidney donation. That’s why we created the Top Twelve “Need to Know” Answers to the most frequently asked questions on living kidney donation. We encourage you to take the time to explore this handout. Learn more here:  See Top Twelve Questions on LKD. 

 

Nationwide effort to expand post-donation benefits to living organ donors

LIVING ORGAN DONORS RECEIVE FREE TELEMEDICINE BENEFITS TO GIVE LIVING DONORS ADDITIONAL MEDICAL PROTECTION
Healthtera, a supplemental health benefits company, that offers 24/7 telemedicine solutions powered by HealthiestYou (HY), announced the roll-out of its Living Donor Family Sharing Program to support the courageous individuals who have gave a piece of themselves to save someone’s life. This first-ever program is a nationwide effort to expand post-donation benefits to living organ donors, which allows live-donor transplant recipients (enrolled in Healthtera’s family telemedicine plan) to cover their living organ donor under Healthera’s “Family-Sharing Plan” at no additional charge.

Here’s how it works:

• Healthtera’s telemedicine subscribers can include their living kidney donor in their telemedicine benefits under their “Shared Family Plan” – at no extra charge.

• Benefits include unlimited 24/7 “on-demand” access to U.S. Board-certified physicians (via telephone, online or mobile app) for medical consultation and medically necessary pharmacy prescriptions.

• The monthly subscription fee for a transplant recipient is $18/month, which covers up to 10 family members total.

• This plan includes unlimited sessions with physicians and there are no deductibles or copay’s.

Of course you don’t have to be a transplant recipient to subscribe to telemedicine. Most people enroll for access to physicians after-hours or when traveling, during holidays and over weekends. This program can eliminate the need to wait days for an appointment for a basic need. It can eliminate the need to go to urgent care for most basic needs.

The TransplantFirst Academy (TFA) with Healthera’s principals, shared our founder’s story and vision to expand coverage to transplant recipient subscribers who would like to include their living organ donor in their family plan. This ground-breaking concept was approved and now recognizes living organ donors as life-saving health-heroes who deservedly qualify for coverage under their transplant recipient’s “Shared Family Plan.”
TFA feels it was a privilege to have played a small role in influencing this unprecedented expansion of benefits for non-related living donors.
They invite you to spread the word about this unique “extra layer of protection” that now allows organ transplant recipients to consider having for themselves, their families and their selfless health-heroes, their living kidney donors.

View Billboard Campaign to Honor Living Kidney Donors Here: 1kidney.org

Learn more here: http://finance.yahoo.com/news/living-organ-donors-receive-free-162700941.html

Living Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan
Living Organ Donors Can Now Receive An Extra Layer of Protection, Through Their Recipients Tele-medicine Family Sharing Plan

Living Kidney Donor Tribute Inspires Followers

TransplantFirst Academy is raising community awareness in living kidney donation.

TransplantFirst Academy urged Phoenix Mayor Greg Stanton to approve a proclamation in honor of living kidney donors for their brave gift. The proclamation was approved to be recognized throughout the month of January.

“Most healthy individuals don’t realize that they can donate one of their kidneys and make an immediate impact on someone’s life,” said Risa Simon, founder and CEO of TransplantFirst Academy. “The mayor’s proclamation combined with our billboard campaign, a tribute showcasing real-life living kidney donors, aims to expand awareness.”

“Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. Their decoration of a few tiny scars is a unique distinction of lifetime achievement for the role they played in saving lives.”

Living kidney donation is not for everyone. It takes a very special and healthy person to qualify. Simon added, “Kidneys are hard to come by and our nation’s deceased organ supply simply cannot meet the demand. We hope that our billboard campaign makes people aware that they can make an impact now, not just after they are deceased.”

TransplantFirst Academy’s billboard campaign goal is simple:
1. Honor living kidney donors for saving more than 132,160 lives (2,834 lives in Arizona) as of December 25, 2015.
2. Capture community attention that ignites interest in living kidney donation.
3. Save lives by ending the life-threatening wait for those in need.

As a passionate patient advocate and preemptive transplant recipient, Simon said, “When my living donor stepped forward on my behalf, I received more than a highly functioning kidney. I received a sense of duty to advocate for all those facing this reality.”

About TransplantFirst Academy:
TransplantFirst Academy is a 501c3 non-profit organization based in Phoenix, Ariz., dedicated to empowering and improving kidney patient outcomes. For more information, visit transplantfirst.org. To become a sponsor or request an interview, contact Risa Simon at 480-575-9353 or risa@transplantfirst.org.

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Patient Engagement And Outcomes

womenAccording to an article published in the Wall Street Journal on March 31, 2014, patient outcomes can be impacted by how engaged they are in their care. In this article, How Doctors Rate Patients, studies show that patient outcomes are better—and costs are lower for patients who are actively involved in their care. So why aren’t more patients getting actively involved? Because most patients lack the skills and the confidence to be this kind of patient – and because most healthcare providers haven’t yet recognized this unique way to improve patient engagement and outcomes.

Patient Activation Counts

Patient engagement is becoming a scale upon which patients are rated for their level of “Activation.” Patient activation, described as the measure of how engaged patients are in their care, run from little to no activation, to highly activated.

Highly activated patients are those who show better outcomes and incur lower costs. The problem, however, is that roughly 40% of Americans lack the skills, knowledge and confidence to become fully activated patients. In this group of patients, it is more common to see non-compliance issues like failing to take their medications, skipping preventive screenings and patients who end up back in the hospital soon after discharge.

Encouraging higher levels of patient activation is especially important for patients trying to manage diabetes, high blood pressure or other chronic health conditions, like chronic kidney disease (CKD).

The value of patient activation has translated into benefits for hospitals, healthcare plans and employers who are now beginning to score individuals on how engaged they will be in their care. This process can be accomplished using an assessment tool called the Patient Activation Measure, or PAM.

Patient Rating System Reveals More

PAM scores patient engagement from a level of 0 to 100 by rating 13 statements, such as “I am confident that I can tell a doctor my concerns, even when he or she does not ask.” The results are categorized into one of four activation levels. Patients whose scores rate at level 1, the lowest level, lack confidence and problem-solving ability. Level two is for patients who just starting to build their confidence, whereas level three is for patients who are beginning to use their knowledge and confidence to take action. The highest level, level four, are patients who have transformed their passive habits into proactive behaviors and are pushing forward, despite the fact that they may still struggle in times of overwhelm.

Communication, Communication, Communication

A key benefit to this novel scoring process is that it allows healthcare providers to tailor their communications accordingly, so patients feel empowered rather than overwhelmed. Personalizing patient communications encourages patient confidence, diagnosis ownership and the desire to proactively secure the best outcome.

The PAM evaluation process and reflective scores also help patients recognize the need to improve communication with their doctors. Likewise, it helps care providers become more mindful of the need to encourage patient engagement.

This interactive assessment model also underscores the need for patient empowerment and self-advocacy training, group mentoring/coaching and further investigation of interventional tools that improve patient education and resulting outcomes.

Engagement Supports Patient Compliance, Decline in Hospitalizations & Savings

According to Insignia Health’s Chief Executive Chris Delaney, a single point increase in a PAM score can result in a 2% improvement in medication adherence and a 2% decline in hospitalization, with a reported savings ranging from $260 to $3,700, per patient on an annualized basis. Other improvements reported include a 42% decline in average quarterly emergency and urgent-care visits over 18 months at a primary care practice that used the PAM scoring test in Eugene, Oregon.

“Everyone assumes this is sort of a soft science, but we can measure patient activation just as rigorously and scientifically as other things in health care,” Judith Hibbard, a senior researcher at the University of Oregon’s Health Policy Research Group and lead developer of the PAM assessment.

apa

To learn more visit: www.transplantfirst.org

 

Missing Link in CKD Patient Education

960.Proactive.Engagement.sideviewMany chronic kidney disease (CKD) patients are floating in a sea of uncertainty due to inadequate patient education and various knowledge barriers. Consequently, the patient’s understanding of various treatment options—and how the timing of engagement can impact each outcome, is often lost in the shuffle.

With the clock ticking behind the scenes, CKD patients often look to their physicians for advice. While the tendency to delay end stage option discussions early on because it can cause unnecessary fear, it also closes life-changing doors for those who could medically benefit from a timely transplant.  

Hence, early education is key, especially for patients who are told “You’ve got lots of time.” Telling a patient they aren’t “sick enough” to learn robs them from learning more and proactively fighting for their best life possible. Regardless of perceived timelines, patients need to recognize how oblivious and passive behaviors can negatively impact future outcomes.

The missing link in CKD education is the delayed timing of introductions, which are encouraged to begin at Stage 4 kidney disease. Yet, kidney patients deserve the right to discover transplant opportunities—before their declining health completely forbids them from becoming a potential candidate. They deserve the right to fight for a better quality of life when they are healthy enough to give it all they’ve got.

Physicians have the power to course-correct this conundrum by simply engaging their patients in earlier stages of in their disease continuum, (ideally starting no later than eGFR 59, as patients enter Stage 3 kidney disease). Time is king and information is power. Physicians can empower their patients by sharing information early and repeating it often. Encouraging patients to proactively slow the progression of their disease and fight for a better life becomes key to achieving better outcomes.

Patients deserve to know what their future might look like and how they can drive their best path forward. They also deserve  plenty of time to learn more, explore more and contemplate their options before time of need. It’s the only way to ensure sound decisions are make.

Asking Key Questions

It’s extremely important to encourage patients to become more engaged by  advocating for their best life possible. Encouraging patients to ask important questions and contemplating opportunities before their clock runs out is essential. 

The questions listed below encourage an open dialogue, while positioning healthcare providers as leaders who guide their patients on a more proactive path to their best life possible.

  • Is Transplant A Better Option To Consider Over Dialysis?”
  • How Do Outcomes Differ Between Dialysis Patients & Transplant Patients?”
  • Do You Think I Might Be Transplant Eligible?”
  • If I’m Not Transplant Eligible, Can I Improve My Future Chances?”
  • What Should I Do To Secure Long-Term Transplant Eligibility?”
  • What Transplant Centers In the Area Should I Consider?”
  • How Do I Get A Referral to A Transplant Center?”
  • What’s The Best Timing For Referral?”
  • How Long Is The Wait On The National List For A Deceased Donor’s Kidney?”
  • Are There Long Term Benefits In Getting A Transplant From A Living Kidney Donor?
  • How Would I Ask Someone To Consider Being My Living Donor?” 
  • How Early Should I Start This Dialogue?”

Conclusion

Addressing important questions long before the patient is in need of renal replacement therapy is key. Educating patients as they enter Stage 3 (eGFR 59) will empower their timeline to contemplate, plan and prepare for their best outcome. Early transplant referrals will inspirit potential recipients from attracting potential donors. Finding and testing living kidney donor takes time—often years. The evaluation process for potential recipients also takes time. When education is delayed and decisions are postponed, outcomes are put at risk.  

At the TransplantFirst Academy’s founder, Risa Simon, instilled the wisdom she discovered as a preemptive transplant recipient to inspire all eligible CKD patients to seek a more proactive path for circumventing dialysis. Her pioneering efforts toward patient self-advocacy and empowerment have become the core fibers in the TransplantFirst Academy’s vision.

The TransplantFirst Academy is dedicated to bridging the missing link in CKD patient education and CKD patient empowerment, by providing healthcare providers an advanced education system beginning at early stages (starting at eGFR 59), before illness advances or depression sets in.

When CKD Patients Are Exposed To Advanced Information Regarding Renal Replacement Therapy (Shortly After Their Initial Diagnosis), They

Are Better Equipped To Fully Participate In & Proactively

Advocate For Their BEST LIFE Possible.”

– Risa Simon, Founder TransplantFirst Academy

CKD patients need to secure a better life for themselves by becoming more engaged in the process long before illness advances. Let’s give them their best shot at living the quality-of-life they deserve.  Inspire your patients to seek a better future by offering this exceptional learning system in your office. Visit: www.transplantfirst.org

 

Five Most Common Mistakes Kidney Disease 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 Chronic Kidney Disease (CKD) patient landmines by becoming your own best advocate. 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 CKD 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. You’re the patient and you need to take some responsibility here too by asking key questions and encouraging a dialogue. Your numbers play a significant role in the progression of your disease. They also alert you to a potential problem that you might not be aware of and that you might be able to reverse before the problem worsens.

To keep yourself well informed and proactively involved in your health, step-up your game a notch or two by following these patient self-advocacy tips:

  1. Set your digital calendar to sound an alarm or send you a message when it’s time to check your BP and weight, or get down to the lab.
  2. Keep a spreadsheet for tracking your BP and weight by date.
  3. Keep an observation diary for tracking new and unusual symptoms that might be associated with fluctuations in areas such as BP or weight.
  4. Insist on getting a copy* of your lab results faxed to you at the same time your doctor’s office receives them. This way you can review them and prepare your questions in advance. (*Your doctor will need to indicate this “CC” request on EACH lab order. Do not leave the office until this request has been confirmed. There’s nothing more frustrating than arguing with a lab about your right to obtain your results).
  5. Create a spreadsheet for your lab values as well. This will allow to plot your numbers by date for visual comparison trends. Being organized will also allow you to more efficiently formulate your questions at each visit.

While your labs can look like Greek to you, do not be intimidated. Keep your eagle eyes on these 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. Of course, watching for blood or protein in the urine must not be overlooked either. Follow these tips to more effectively partner with your healthcare team as you become your own best advocate. Information is power.

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 engage, you’ll influence the focus of each appointment from the moment your doctor walks through the door.

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. (Utilize your BP, weight and lab comparison spreadsheets).
  3. Your concerns, desires and future 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 or maybe even a bit premature), but I think it’s important enough to bring up. May I use this appointment time to share a couple of concerns I have with you?”

If you find your doctor seems distracted when you try to open this dialogue or just too rushed to listen, you might consider email communication as an alternative if your doctor is open to it. Bottom line, it’s extremely important to sense the door is always open for communication with your doctor. You should not have to walk on eggshells to approach a topic. 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. You’ll never be able to achieve your goals if you don’t feel like you’re an integral part of the team working on a plan to secure your best future.

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. By using what I call the “side-view mirror approach,” you’ll be more cognizant of potential illusions, just like “Objects in the mirror may be closer than they appear.”

While the “if” and “when” of losing complete kidney function may 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 will motivate you be fully prepared with a “ready-set-go” mindset for seizing optimal 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 with a mentor and coach-advocate along with your healthcare team to create a coalition of specialists to support your proactive intentions. This is how you’ll be able to 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. This misconception can keep superior choices beyond your reach.

Woefully, less than 3% of CKD patients choose a preemptive transplant (a transplant performed 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, if anything. (Common transplant restrictions include serious active infection, active malignancy, heart disease and obesity). Learn the rules and then give it all you’ve got to achieve the best possible outcome.

Mistake #5: Neglecting To Disclose 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 the nearly 97,000 people waiting for a kidney transplant, our national organ shortage and it’s catastrophic wait for deceased organs. No doubt your story will elicit curiosity to learn more—and perhaps even do more.

Don’t think that sharing your story is pointless because if someone really wanted to help they would have already done so. This is foolish and self-sabotaging thinking. Until others truly understand your situation and the national 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 and private coach, Risa has one goal: To empower kidney patients to become their own best advocate. Risa is the founder of the TransplantFirst Academy, The Proactive Path and Simon Says Seminars, Inc. Risa also runs the Phoenix Chapter of the Polycystic Kidney Disease Foundation while serving on prestigious renal organization advisory committees. Known as “The kidney patient’s patient advocate,” Risa followed the proactive systems she created for herself and others—and is now living her best life ever. This is what she wants for all transplant eligible patients. Her tips, scripts and Donor Magnet® system can be found in her book: Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients available on amazon. For more information visits these links:

www.transplantfirst.org 

www.theproactivepath.com

www.shiftyourfate.com.

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