Kian Auerbach: Living-Donor Kidney Transplant Patient Story

Kidney Disease and a Daughter’s Promise

Kian’s father was diagnosed with kidney disease when she was just two. It was difficult watching him struggle with health issues as she grew up, and Kian promised him that one day she would save his life.

After a six-year career in the Air Force, Kian moved to Las Vegas, Nev., and took a job working on fighter pilot simulators. Back home in the Pittsburgh area, her father continued to struggle with kidney disease and the toll that dialysis took on his body.

When Kian learned that her father needed a kidney transplant, she assumed he’d have to wait for a deceased-donor kidney. Once her family learned that living-donor kidney transplant was an option, Kian jumped at the opportunity to potentially become her father’s living donor. Her parents were resistant to the idea at first, but Kian was determined.

“I said, ‘Please let me do this for you. I promised you a long time ago.’ This is something I could do for him as a thank you,” says Kian. “He’s my father and my best friend.“

From Las Vegas to Pittsburgh

Kian traveled to Pittsburgh for a living donor evaluation and learned she was a match shortly after she returned home to Las Vegas. Her response?

“Ok, when can we do this?”

Kian shared the news with her husband and two children and spoke openly with them about the process.

“My kids were nervous but very excited because their grandfather was going to be healthy for the first time in a very long time,” she says.

She had her family’s support when they accompanied her to Pittsburgh two months later to become her father’s living-kidney donor.

“I wasn’t even nervous for surgery,” she says. “I was so excited and ready to go.”

On surgery day, Kian and her father were wheeled to the pre-operative area together – a moment she describes as “pivotal and powerful.” Kian’s IVs were placed first.

“My father’s veins aren’t really good, so it can be a struggle to get his IVs in. It can be a lot more painful for him,” she says.

The nurse anesthetist wheeled Kian beside her father so they could hold hands during the process.

“It is such a core memory for me,” Kian says. “It was just that moment and them being so loving, compassionate, and supportive. They made sure we were so connected until I absolutely had to get wheeled away.”

Life After Living Donation

Kian and her father had successful surgeries, and both are doing well in their recoveries. Kian is back home and doing what she loves – cooking and spending time with her family. She describes her father as “thriving with a better quality of life” after his transplant, as he no longer suffers from the side effects of dialysis.

Kian is grateful for the care she and her father received at UPMC and expresses particular gratitude to Dr. Amit Tevar.

“He is a surgeon and a person that everybody should emulate. I have so much respect for him – his care, his compassion, and his love for every single one of his patients,” she says. “The whole transplant team is absolutely phenomenal.”

Kian is grateful she could keep her childhood promise to help her father, and she encourages others to consider living donation.

“We have two kidneys for a reason. We have this amazing ability to give someone life,” she says. “To know that so many people die waiting on a kidney? They have those memories stripped from them. They have that time stripped from them. Please give someone the gift of life. Please give someone those memories – those hugs with their grandchildren; those hugs with their children.”

These patients' treatment and results may not be representative of all similar cases.

Kidney Transplant: Neil’s Story

Neil Emmott, 55, is a husband, father of 12- and 8-year-old daughters, and a successful businessman who runs a yacht brokerage business in Fort Lauderdale, Florida. Raised in South Africa, he’s traveled and lived all over the world. Despite building a worldwide network of clients and friends, Neil is a private man who prefers to fly under the radar. That’s why when he learned in 2001 that he had polycystic kidney disease (PKD), a genetic disease that eventually leads to kidney failure and the need for a kidney transplant, he told only a handful of people about the diagnosis.

“The diagnosis was a surprise because no one in my family had PKD,” recalls Neil. “At that point, and for the first several years, my kidney function was high and I had no symptoms. I wasn’t going to worry until I needed to.” Time to Find a Kidney Transplant Center Neil's kidney function slowly declined, but it wasn’t until April 2016 that it dropped to below 20 percent, which meant it was time for him and his wife, Lisa, to begin researching transplant facilities to find one they felt comfortable with. They chose Johns Hopkins based on their experience with the hospital when they previously lived in Baltimore. Lisa had a number of surgeries there, and they had faith in the expertise of the surgical teams. Neil also had a Johns Hopkins nephrologist (a physician specializing in kidney care) following his condition. Johns Hopkins Comprehensive Transplant Center surgeon Niraj Desai, M.D., says the hospital’s reputation — especially for kidney transplants — is a draw for patients from around the world. “Johns Hopkins leads the way in research and has pioneered many of the advanced procedures and techniques in kidney transplantation,” says Desai. “This is where other transplant centers refer more complicated transplants.” Neil's kidney function dropped to 11 percent in April 2017, a level that meant he would soon need dialysis. It was time to find a donor. The Realities of Finding a Kidney Donor Like all people who need a kidney transplant, Neil had the option of a transplant with a deceased donor’s kidney or one from a living donor. Both options present challenges when it comes to finding a kidney that is a blood and tissue match. According to the United Network for Organ Sharing (UNOS), which manages the list of everyone across the U.S. waiting for an organ transplant, more than 95,000 people currently are on the waiting list for a deceased-donor kidney. They’re facing at least an average three- to five-year wait, while they depend on a dialysis machine three times a week to do the work their kidneys no longer can. Obtaining a kidney from a living donor eliminates that wait. Unfortunately, the number of people volunteering to donate a kidney doesn’t meet the demand. In 2017, 5,811 people received a kidney from a living donor, saving only 20 percent of those waiting for one. Desai believes lack of awareness about the impact of kidney donation — for the donor and recipient — is the main culprit behind the shortage of living kidney donors. “People don’t realize that living kidney donation is an extremely safe procedure. There’s a low risk to donors or we wouldn’t do it,” says Desai. Results from a 2015 Johns Hopkins study of more than 90,000 living kidney donors proved as much, revealing that donating a kidney didn’t change donors’ life expectancy. “People also don’t realize that kidney transplant doubles someone’s life expectancy,” says Desai. “That’s a huge impact.” A myth about donation is that a willing donor and recipient have to match in order for someone get a kidney. If a person is healthy but not a match for an intended recipient, a paired kidney exchange, also known as a kidney swap, matches an incompatible donor/recipient pair with another incompatible donor/recipient pair. The pairs register with organizations such as the National Kidney Registry that match living kidney donors with recipients from a vast database of other incompatible pairs. “The earliest paired exchanges were done at Johns Hopkins — we had the first registry in the U.S.,” says Desai. “Today we work primarily with the National Kidney Registry.”

People don’t realize that living kidney donation is an extremely safe procedure. There’s a low risk to donors or we wouldn't do it. Niraj Desai, M.D., Johns Hopkins transplant surgeon

The Search for a Living Donor Begins Of the handful of people who knew Neil needed a transplant, his wife and his brother were willing to donate but couldn’t due to health conditions. Neil would have to open up and let people know about his need, a tough request for a private man who wasn’t used to asking for help. He had a tireless advocate in Lisa, who got to work spreading the word. She became active on social media and a website where people share health information and needs in one centralized place. She also did community outreach, speaking before a men’s group in which her husband is a member. “Privacy has an expiration date,” says Lisa. “A conversation can save a life. You have to raise awareness and cast a wide net. People who want to help will rise to the occasion.” And they did. People from seven countries and four continents, from close friends to complete strangers, came forward and enrolled at Johns Hopkins as willing donors for Neil. His case was unique — two donors were ultimately approved to donate a kidney to him through the National Kidney Registry paired exchange program. Neil and these two donors became part of a 16-person chain (eight donors, eight recipients) of transplant surgeries at Johns Hopkins in late 2017. Neil and seven other people from across the country received new kidneys. Life With a New Kidney The Emmotts agree that choosing Johns Hopkins put them in the best hands. “The knowledge, expertise and wisdom of everyone at Johns Hopkins was second to none,” says Neil. “Everyone was diligent and caring, down to the techs who took my vitals at 4 a.m.” Lisa adds, “Dr. Desai was phenomenal. He gave Neil the surgical excellence he deserved in the operating room, and gave us the attention we craved in the recovery room.” Neil says that after the transplant he felt better immediately and his energy levels came racing back. “Before the transplant I was sleeping 10 hours a night and waking up exhausted,” he says. “I realized after the transplant how bad I had really felt.” Lisa is grateful to have the ordeal behind them. “It was the toughest season we’ve ever faced,” she admits. “Finding the kidney was the hardest part of the journey.” She’s using their experience to help other people navigate their journeys. She’s working to increase awareness about paired kidney exchange and how to use tools such as social media. “Help is right outside of your comfort zone,” she says. “We need to educate and empower people, teaching them how to ask for a kidney and how to give a kidney.” Desai says the Emmotts’ experience was a success in many ways. “It illustrates the power of living donation and paired exchange,” he says. “Two generous living donors were willing to step up and be tested, which led to transplants for multiple recipients.”

World Kidney Day 2023 – Kidney Health for All Preparing for the Unexpected

World Kidney Day 2023 – Kidney Health for All

Preparing for the unexpected, supporting the vulnerable!

The significant impact of disastrous events, be they local (earthquake, floods, war, extreme weather) or global (the COVID-19 pandemic), affects the functioning and living conditions of the community as a whole, by definition resulting in one or more of the following consequences: human, material, economic and environmental losses and impacts.[1] Those affected by chronic disease, of which kidney patients represent more than 850 million people worldwide, are particularly affected by these disruptions, as the ability to access proper diagnostic services, treatments and care is greatly jeopardized.

Non-communicable diseases (NCDs), which include cardiovascular diseases, diabetes, cancer, hypertension, chronic lung diseases, and chronic kidney diseases (CKD), are known to be the leading causes of death and disabilities worldwide, significantly so in low- and middle-income countries. In the event of emergencies, this cohort of the community is among the most vulnerable in the population due to their ongoing requirements for consistently coordinated care – care, which is often lifelong, and involving complex ongoing treatment.

In recent years, the COVID-19 pandemic has provided a clear example of the challenges faced by health care systems in providing essential health services to patients with NCDs. The impact of COVID-19 on the health system has placed an added strain on this vulnerable population, who have had to deal with the risk of becoming infected while visiting health facilities, or indeed the suspension or cancellation of non-COVID-19 care due to health service capacity limits and lockdown policies. Health services have struggled to provide access to the ongoing incidence of new NCD cases needing diagnoses, management, and care. With no actual cure or treatment to prevent progression of CKD, the under-detected and unhindered progression of CKD to kidney failure will most certainly increase the global need for life-saving costly treatments of dialysis and transplantation.

Finally, the COVID-19 pandemic has aggravated an already insufficient global political health commitment on NCDs. NCDs are too often incorrectly perceived as due to poor lifestyle choices, with policy deficits compounded by allocation of insufficient public health funds that focus on management rather than prevention, and of only a few of the recognised NCDs – cardiovascular disease, cancer, diabetes, and chronic respiratory disease. Yet, it is estimated that 55% of the global NCD burden is attributed to diseases outside of this group, such as kidney disease. Furthermore, the burden of these four more favoured NCDs is amplified in the presence of kidney disease, frequently co-existing. Public health policy that better reflects the opportunities in preventative strategies and the importance of both the magnitude and synergistic aspects of kidney disease as part of the NCD burden are urgently needed.

Therefore, preparation for unexpected events is incredibly important for kidney patients.

• Policymakers need to adopt integrated health strategies that prioritize prevention, early detection, and management of NCDs, including kidney disease.

• Health care services should provide equitable and proper access to care for chronic patients in times of emergency.

• Governments should include emergency preparedness plans in the management and detection of NCDs and favor the prevention of these conditions.

• Patients should plan for emergencies by preparing an emergency kit that includes food, water, medical supplies, and medical records.