World Kidney Day 2022 – Kidney Health for All

Bridge the knowledge gap to better kidney care

Chronic kidney disease (CKD) is common and harmful: 1 out of 10 adult people worldwide have it, and if left untreated it can be deadly. While early detection allows for disease care and management to help prevent morbidity and mortality, and improve cost effectiveness and sustainability, kidney disease related mortality continues to increase yearly and is projected to be the 5th leading cause of death by 2040. A persistent and ongoing CKD knowledge gap exists, one that is demonstrable at all levels of healthcare;

• The community – Obstacles to better kidney health understanding include the complex nature of kidney disease information, low baseline awareness, limited health literacy, limited availability of CKD information, and lack of readiness to learn. (WKD 2020).

• The healthcare worker – Another barrier to overcome in order to ensure greater awareness is a more focused education of physicians, as they are in charge of the patients’ medical condition. (WKD 2009)/ (WKD 2021)

• The public health policy makers – Finally, CKD is a global, public health threat but is typically low on government health agendas (WKD 2008) with political commitments on non-communicable disease programs concentrating predominantly on four main diseases – cardiovascular disease, cancer, diabetes and chronic respiratory disease.

This knowledge gap is stifling the fight against kidney disease, and increasing the inherent associated mortality.

The WKD Joint Steering Committee calls for everyone worldwide to not only be aware of the disease, but to actively know what their own kidney health measures are. For example, what their blood pressure is and what the treatment objectives are (WKD 2010). It is a cause that involves all of us in the kidney community worldwide — physicians, scientists, nurses and other health-care providers, patients, administrators, health-policy experts, government officials, nephrology organizations, and foundations. All need to be aware of the ways in which more attention to the kidney in the setting of government policies can lead to major benefits both to patients and to health-care budgets (WKD 2007).

Moreover,

• Encourage general public to adopt healthy diet and lifestyles (access to clean water, exercise, healthy diet, tobacco control, and climate change prevention) to maintain good kidney health, preserve kidney function longer in those with CKD, and increase overall general awareness of the importance of kidneys

• Extend kidney patient education (including practical advice on diet and lifestyle) to empower patients, their care-partners, and their support systems to achieve the health outcomes and life goals that are meaningful and important to those with CKD including kidney failure.

• Recognise patients’ and caregivers’ right to be able to assess, understand and use health information related to CKD

• Require kidney healthcare providers and patient organisations to offer information related to CKD according to varying levels of health literacy.

• Encourage and support primary care physicians to improve their recognition and management of patients with CKD across its entire spectrum from prevention and early detection of CKD to its secondary and tertiary prevention and kidney failure care

• Integrate CKD and kidney failure prevention into national non-communicable disease programs for comprehensive and integrated services, which are essential in improving the early detection and tracking of kidney care at country level

• Inform politicians about the impact of kidney disease and kidney failure on their constituents’ health and its associated burden on healthcare budgets/systems to encourage the adoption of policies and allocation of resources which tackle the global burden of kidney disease and ensure living well with kidney disease

How organ donations broke records even during the pandemic

By Helena Oliviero, The Atlanta Journal-Constitution

Last fall, Jeff Hackman’s kidney disease turned serious. He felt tired all the time, got winded easily. Years earlier, his older sister, Dawn Martin of Marietta, made a promise: when the time comes, she would gladly donate one of hers. Within a few months, the siblings, who were a good match, passed a battery of tests, and a surgery date was set for Dec. 8.

But with omicron sweeping through the country at a dizzying pace, the siblings were filled with worry about the timing for this life-saving procedure, concerned the pandemic could delay the surgery or even thwart the procedure indefinitely. “Absolutely it was the forefront of our minds,” said Hackman, a Miami-based firefighter and first responder, said about COVID-19.

In the end, the surgery went off without a hitch. Hackman, who is 46, married and father to two teenagers, got a new lease on life. He was part of a remarkable trend: last year, in the throes of the COVID pandemic, a record-breaking number of organ donations took place in the U.S., particularly in Georgia.

Across the country, 41,354 organ transplants took place in 2021, a 6% increase from the previous year. In Georgia, the increase was sharper with 1,243 organ transplants taking place — marking an 18% increase from 2020.

Despite challenges posed during the pandemic, major advances in medicine and technology surrounding the preservation and matching of organs combined with outreach efforts to fight the stigma of organ donation have helped keep donations steadily rising year after year.

Credit: HYOSUB SHIN / AJC A new organ recovery center at Piedmont Atlanta Hospital opened up a year ago with its own dedicated care team of nurses and doctors. Using innovative organ preservation techniques, the center has improved the number and viability of organs available in Georgia. Demand for organs continues to outstrip supply by a wide margin. According to LifeLink of Georgia, a local not-for-profit organization dedicated to recovering organs from deceased donors for transplantation, 3,891 Georgia residents are waiting for a transplant. Wait time can vary from months for a lung or heart transplant to three to five years for a kidney. Last year, 237 died without getting one, and another 156 were removed from the waiting list because they became too sick to undergo surgery.

But there are new strategies and resources in Georgia that could increase the supply of organs to better meet that demand.

“We have worked really hard to make Georgia a donation-friendly community and our job is in public education. We don’t want to force people to make a decision, but we want to give people the correct information and dispel myths,” said Tracy Ide, a project manager for LifeLink of Georgia.

Credit: HYOSUB SHIN / AJC One of the biggest myths surrounding organ donation is that patients who might otherwise be saved are sometimes left to die so their organs can be taken. Strict regulations are in place to prevent this from happening. Doctors don’t typically know whether a patient is an organ donor. Procurement organizations are not notified until all lifesaving efforts have failed.

There’s no age limit on organ donation, and there is no medical condition that “absolutely” rules out organ donation, according to Ide.

Organ donation, with the primary exception of living kidney donation, occurs after someone has died from an injury, such as a car accident, gunshot wound, or accidental drug overdose, that results in brain death. Hospitals are required by law to contact their local organ recovery organization any time someone dies so that donation may be considered as a possibility. It’s only at this point the local organ procurement organization (In Georgia, it’s LifeLink of Georgia) looks up the registry to determine whether the patient had signed up to be a donor.

Credit: HYOSUB SHIN / AJC The pandemic has created new challenges for organ donations. Medical staff already stretched thin have been less able to coordinate donations. Thorny questions emerged, particularly around whether the organs of someone who has had COVID-19 are safe to be transplanted.

There is no universally accepted set of recommendations regarding when organs can be safely recovered from patients who are COVID positive. Doctors, less conservative than earlier in the pandemic, are more open to using organs from a patient with COVID who was hospitalized for another reason, such as a serious car accident. Abdominal organs below the diaphragm, like kidneys or livers, are considered for transplantation even if donors test positive, according to Dr. Clark Kensinger, a transplant surgeon at Piedmont Atlanta and associate medical director for LifeLink of Georgia.

However, Kensinger added surgeons have avoided transplanting the lungs of patients who died of COVID.

‘Means a lot’

In January 2020, Charmon Shelnutt of Cartersville returned home from an errand to find her 29-year-old daughter, Brooke, collapsed on the floor in her bedroom. Brooke had accidentally overdosed from a fentanyl-laced drug.Brooke, who had a faint heartbeat, was rushed to the hospital. There was no brain activity, and Brooke was not going to survive.

Credit: Contributed Shelnutt thought back to a conversation the two had just days earlier. The topic of organ donation had come up. Two decades earlier, Shelnutt’s husband – and Brooke’s father – died in a car accident. Shelnutt was asked about donating her husband’s organs, but she said, “at the time, it just wasn’t something I was comfortable with.”

Brooke had signed up to be an organ donor through her driver’s license, but also she told her mom she wanted her to know, should anything happen, she wanted to be an organ donor.

The pain is still deep, but Shelnutt said she takes some comfort in knowing her daughter saved a woman’s life. She recently connected with the woman who received one of her daughter’s kidneys. Shelnutt said her views on organ donation have changed. “Brooke was my everything. Knowing there is a part of my daughter that is still alive,” Shelnutt said, “that means a lot.”

New Recovery Center

The new LifeLink Organ Recovery Center at Piedmont Atlanta Hospital is a partnership between LifeLink of Georgia and Piedmont Atlanta. The centralized organ procurement center, opened a year ago during the pandemic, is the first of its kind in the state and one of only a few like it in the country.

“It’s what we have been able to do despite the pandemic, not like within the pandemic,” said Kensinger. Organ donations fell during surges, he said, adding, “We were doing this in between peaks.”

Since its opening, close to 80% of deceased adult organ donors from across the state are brought to Piedmont’s center.

Organ transplants by the numbers 1,049 - number of organ transplants in Georgia in 2020 1,243 - number of organ transplants in Georgia in 2021 3,813,385 - The number of Georgia residents who have registered to be organ donors. 93% - Percentage of Georgia organ donors who have signed up through the state Department of Driver Services. Q: What organs can a living donor provide? A: A kidney is the most commonly transplanted organ from a living donor, according to the United Network for Organ Sharing, or UNOS, the nonprofit group that manages the nation’s transplant system. (LifeLink of Georgia is one of 57 local organ procurement organizations that partners with UNOS).One entire kidney is removed and transplanted. Living liver donation, where a segment of the donor’s liver is transplanted, occurs less often, and the donor is usually related to the recipient. Also, in rare cases, a uterus or a segment of other organs such as a lung, can be transplanted from a living donor. Q: What organs can a deceased donor provide? A: One donor can donate and save up to eight lives by donating organs after death. The organs that can be donated include the heart, intestines, kidneys, liver, lungs an d the pancreas. Q: What organ is most in demand? A: Kidneys are most needed and livers are second. About 83% of the people on a transplant waiting list in the U.S. are waiting for kidney transplants, and about 12% are waiting for liver transplants, according to UNOS. Since its opening, 517 organs have been recovered from 175 donors. Already, the organ recovery center is averaging close to one more organ per donor compared to the average of organ donors who stay at local hospitals around the state.

The center receives patients from around Georgia who had made plans to be an organ donor and due to an accident or illness have been declared deceased. They are cared for and kept on mechanical support with blood and oxygen flowing, keeping organs viable until they can be transplanted. The machine is not keeping the patient alive — brain death is irreversible and is legally and medically recognized as death.

The space includes six ICU bays, two operating rooms, and private rooms for donor families. Grief and spiritual counseling are provided.

Credit: HYOSUB SHIN / AJC On a recent morning, there was a single donor inside the organ recovery center. “Our focus is the donors, and that’s the mission that is driving us: making sure we are being stewards of their gifts,” said Kensinger. “When donors aren’t being transported to the organ recovery center, there are times when the shift of attention moves away from the donor to the other patients (at the local hospital). So what we are able to do is to provide really, really focused care that is looking to optimize organ recovery.”

‘Eternally grateful’

Elizabeth “Libby” Grimland of Marietta knows what a profound gift an organ donation is. About five years ago, Grimland, now 64, was weak and was having trouble breathing. She was eventually diagnosed with liver disease, caused by hemochromatosis, a hereditary condition that causes the body to absorb too much iron. Home-bound and hooked up to an oxygen tank, she was placed on a transplant list in the fall of 2020.

“It was not a life for anyone to live, it was the worst of the worst,” said Grimland. “I couldn’t really do anything and I had come to terms there was a very high possibility I would die before I would get a transplant.”

Credit: Contributed On Jan. 13, 2021, Grimland got the call to go to the hospital right away. She was getting a new liver.

“I am doing everything I wanted to do for so long,” she said. She is making new friends and enjoying hikes to the top of Kennesaw Mountain again. She’s able to actively volunteer again at her church and with an organization that helps homeless veterans. “There is no stopping me.”

Meanwhile, Hackman has returned to work with an in-office role, but he hopes to return to his previous work as a firefighter soon. He recently went on a family camping trip and he’s starting a new Cuban coffee business.

“This has been eye-opening for me,” he said. “You live your life and then you see how people respond in a critical situation like this. I don’t know the right words but to be able to look at a person and to be eternally grateful for my sister to do this for me when my life was on the line, without any hesitation... I am going to show her how grateful I am by taking care of myself and the gift she has given me.”

Tell Your Story: Kyle Cobb CEO/Founder of KKF

Originally born and raised in Atlanta, Georgia, my life was nothing short of a normal childhood. At the age of 12, I was attending Inman Middle school and earned the position of starting quarterback on the football team, and I also ran track. I played baseball as well as being a member of the honor society. 

My seventh-grade year was coming to an end; I was attending school on what I thought would be a regular day. Nearing the middle of the day, I abruptly fainted in the middle of class. My mother rushed me to the urgent care facility, and there is where I first faced a diagnosis of end-stage renal failure (chronic kidney disease). I was immediately placed on kidney dialysis and had to wake up at 4 AM, before school, for three months to attend appointments three times a week. A dialysis regime was not the most manageable schedule to adjust to in the eighth grade, but my life depended on it. 

Fortunately, after four months on dialysis, I received a life-saving call for a kidney transplant. The life-saving deceased donor afforded me several opportunities, such as starting our non-profit organization, Kyle's Kids Foundation. I became a Make-A-Wish Foundation recipient, along with having my wish granted of meeting President Barack Obama in the Oval Office. I went on to defy the odds as I graduated high school within the top 10% of my class in May 2014. I received admission to my family's alma mater, Morehouse College, and began my matriculation in August 2014. I participated in the Student Government Association and became an advocate for disabled students within my first two years at the institution.

However, towards the end of my sophomore year, the transplanted kidney, unfortunately, failed due to scarring from my immunosuppressive medication. I was devastated by getting the news that I had to begin dialysis again. With the news coming so unexpectedly, I strongly contemplated quitting school; but I persisted. I was attending dialysis treatments once again three times a week; however, this time, I did the late shift. The nocturnal dialysis shift allowed me to go to school and work during the day and dialyze by night. Instead of 3 & 1/2 hours as I had done when I was 12, I now had to do 6 hours to persevere the condition of my heart. This battle was different this time around, but I was ready for the fight.  While on dialysis and completing my post-secondary studies, I was able to secure a full-time offer from SunTrust Banks, Inc. Juggling dialysis, my full-time internship, and education, I completed my Bachelor's Degree in Finance with an English minor from Morehouse College in May of 2019. I was fortunate enough to be apart of the class that received full loan forgiveness from Robert F Smith. Dr. Smith's generous gift motivated me to want to give back. I doubled down on my non-profit organization's commitment. Still, on dialysis, I began my full-time position at Suntrust Bank in July 2019, along with pushing the vision and mission of Kyle's Kids Foundation. 

 The year 2020 began, and this would've made my third year on dialysis. I was hopeful for the future. I've always been grounded in my faith to know if I made it this far, I'd be just fine. Fortunately, on February 28th, 2020, I received the call for my second kidney transplant. I had a successful surgery, and I am currently recovering.

My goal is the same as it's always been. I want to help and inspire others, specifically the children, that may be going through a similar plight. I am grateful to every volunteer, advocate, and donation given to Kyle's Kids over the years. We are nine years strong, and we have a wide variety of projects and events in the works. I hope you will join the challenge with us.