March 1, 2024 — March is National Kidney Month, which is a month-long, awareness-raising grassroots effort to spread the word across the country about the importance of kidney health. March 9th will be celebrated this year as World Kidney Day, which highlights the importance of preventive interventions to avert the onset and progression of kidney disease. A Kansas family knows all too well the life-saving difference a healthy kidney can make and hopes their son’s kidney journey story will give hope to a family facing a kidney crisis this month.
When Hayden Murnahan was only nine months old, he was diagnosed with Stage IV Chronic Kidney Disease. Learning their baby was in kidney failure during his nine-month well baby check came out of left field for his mom, Crystal. She remembers that up until that point in Hayden’s life they had no clue anything was wrong. Not only was something wrong, but it was serious enough that Crystal and Steve were told Hayden needed to be seen at Children’s Mercy Hospital in Kansas City, Missouri – nearly three hours from their home in Salina, Kansas. And needed to be seen … soon.
The nephrology team at Children’s Mercy told them Hayden’s kidneys were septic and he would need a kidney transplant. According to Crystal, Hayden’s journey became a monthly routine of watching his lab work while allowing him to grow bigger so he could be eligible for a kidney transplant. He reached that milestone close to his fourth birthday. At that time, a family friend offered to be tested to see if she was a kidney match for Hayden. She was, and on May 7, 2012, Hayden received a living donor kidney transplant.
Crystal said, “While we knew this was not likely a cure, it was going to give our toddler the best shot at being healthy so he could keep up with other kids.”
Hayden did great for a while, but just a year later, he started gaining more weight than would be expected. He was also struggling with severe hypertension and numerous viruses his body could not fight. His kidney transplant surgeon ordered a kidney biopsy; it was discovered he had developed antibodies and his body was starting to reject his new kidney.
For almost six years, the nephrology team at Children’s Mercy monitored Hayden and worked with the family to treat the rejection, monitor and stabilize his blood pressure, and fight viruses that he was more likely to catch due to the immunosuppressive medications he took every day. This treatment and care resulted in numerous inpatient stays in Kansas City, which was several hours from their home.
During this time, Crystal and Steve started to face the reality that another kidney transplant was likely in Hayden’s future. They were aware of another family in Salina whose son needed a life-saving transplant. That family had started working with the Children’s Organ Transplant Association (COTA) for support and guidance while waiting for their baby’s heart transplant. Crystal reached out to the family’s COTA volunteer to learn more about whether this might be a good fit for their family as well. On January 14, 2019, she called COTA’s headquarters to learn more and to explain Hayden’s situation. The family had private health insurance, which meant they were dealing with co-pays, deductibles and insurance premiums. Hayden had some over the counter medications that were not covered by their insurance. They lived about 175 miles from the transplant center and with no travel benefit, they were paying out of pocket for travel, meals, and parking. Since they did not know where Hayden’s second kidney would come from, Crystal was pleased to learn COTA funds could be used for living donor expenses. And since they had already gone through one transplant with Hayden, the family knew they simply could not absorb all of the costs associated with a second transplant.
The next day, January 15th, Crystal and Steve completed and sent their signed agreement to COTA’s headquarters, and the Murnahan family officially became part of the COTA Family, and Hayden became a COTA Kid.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child, teen or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On March 4, 2019, a COTA fundraising specialist traveled to Salina to train the family’s group of volunteers, sharing information about the organization’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA for Hayden M was launched, and the website was immediately available to accept online donations to assist with transplant-related expenses.
The volunteer team quickly got to work planning fundraisers. Their enthusiasm, and their success, allowed Crystal and Steve to immediately start breathing a little easier about the financial component of Hayden’s second transplant. One fundraiser, which was held on May 5th for Cinco De Mayo, raised nearly $22,000 for COTA honor of Hayden M.
While the COTA fundraising effort was picking up steam, Hayden’s nephrologist determined his transplanted kidney was simply not the right match for his body. On July 1, 2019, Hayden’s donated kidney was removed leaving the 10-year-old with no functioning kidneys. With no kidneys, Hayden had a peritoneal dialysis catheter surgically placed. But peritoneal dialysis could not be initiated until the surgical site healed; therefore, hemodialysis was administered in the interim.
On July 1, 2019, Crystal posted on the COTA-provided website: “A big thanks to everyone who participated and posted pictures for Team Hayden Day. While Hayden isn’t up to looking at all the photos tonight, we will look at them tomorrow. Hayden will start hemodialysis tomorrow so please be praying for him to tolerate that and for the pain to subside.”
On July 2nd, she posted: “Hayden made it through his first dialysis treatment today. He is still in quite a bit of pain but has a pain pump. We are hopeful as time goes on the pain will subside. Please be in prayer for pain management and rest for Hayden and his parents.
On July 5th: “Hayden was released from the hospital this afternoon. We will be staying at the Ronald McDonald House and Hayden will have dialysis on Monday. He is still pretty sore, but he is such a strong little boy and is taking each day at a time. Dialysis went pretty well this week, and we will continue to work on getting his system stabilized without the kidney.
While Hayden was healing from having the peritoneal catheter placed, Crystal underwent intensive training so she could administer his peritoneal dialysis (PD) at home. Hayden had his final hemodialysis session on July 24th and Crystal completed her dialysis training on July 26th.
On August 3rd, Crystal posted: “Life has been busy this past week. Trying to get back into a routine and doing dialysis every night. Hayden will go back to Children’s Mercy for a surgery we were not planning on. The PD catheter has not stayed in position and so PD has been a little more of a challenge than we anticipated. The surgeon who placed the catheter will go back in and reposition it to work correctly. Hayden will be in the hospital overnight and then be released the next day to come home and continue PD.
On August 10th: “Unfortunately, the replacement surgery for Hayden’s PD catheter was unsuccessful. For now, he will go back to hemodialysis (HD). This is challenging for all of us as we now have to figure out a new plan for school, work, life, etc. Please keep Hayden in your prayers as we make plans and continue with new obstacles.
On September 9th: “Hayden got to spend yesterday with his cousins! He was excited to get out of the house and enjoy family. Hayden is finally adjusting well to PD at home. We are still doing 12-hour treatments every day as this is what his body needs to get the fluid off his system. While this is longer than we had hoped, he is still able to attend school every day. He loves spending time with his friends. This weekend we stopped his last blood pressure medication. This is a step in the right direction as we need his body to stabilize before he gets his new kidney.”
In addition to this good news, the COTA for Hayden M fundraising effort surpassed its $100,000 campaign goal in early September. But Hayden’s transplant journey hit several major bumps in the road throughout the fall of 2019 and into 2020. Due to problematic lab results and issues with Hayden’s stomach, his kidney team at Children’s Mercy decided to place him back on hemodialysis, which was a blow to Hayden. He was enjoying having PD at home, seeing his friends and feeling ‘normal.’ Traveling to the HD clinic three days a week for 4-5 hours a day, was not in Hayden’s plan.
After many setbacks and challenges, it was decided Hayden needed to stay on HD, but at home. That meant Crystal and Steve had to complete a six-week training course at Children’s Mercy. Their hope was that dialysis at home would help give Hayden a sense of normalcy after many months of medical, and emotional, ups and downs. On March 20th, home dialysis became a reality for the Murnahan family. Crystal said, “While we were anxious and nervous about doing home hemodialysis, our goal was to keep him out of the hospital. Given the COVID-19 outbreak, we are concerned for Hayden’s health as his immune system is low and not able to fight off viruses.”
In early April, the family’s routine was working well. Crystal said no words could adequately express how grateful they were to be at home doing dialysis, especially as the pandemic grew in scope and magnitude. Hayden was on dialysis six days a week for three hours every night at home. Crystal spent five hours every night running dialysis, which included setting up the machine and then cleaning up when it finished. The good news was Hayden actually felt fairly good from Spring 2020 until January 2022.
On January 6, 2022, Crystal posted: “July 1, 2019, marked the first day of dialysis for Hayden. 915 days later, Hayden is scheduled for a kidney transplant at Children’s Mercy. The process has been initiated to deplete his immune system so his body will accept this new kidney. Please pray that COVID-19 and all the other viruses stay away from his depleted immune system. He is in good spirits and is a fighter.”
While the Murnahan family experienced so much support and an abundance of blessings through Hayden’s transplant journey, they received one more amazing gift when a community member offered to send a plane (in the midst of a major winter storm) to pick up ‘Hayden’s perfect kidney’ that had been located in West Virginia. This generous benefactor knew about Hayden’s situation and health issues and wanted to make sure the family did not miss this opportunity.
Hayden received his second kidney transplant on January 6, 2022. The first few days following the transplant were stressful as the team, and Hayden’s parents, waited for his new kidney to ‘wake up.’ But on Day 5 post-transplant, Hayden was finally free of all catheters. On January 14th, Hayden, Crystal and Steve were headed home to Salina.
Looking back now, two years since Hayden’s transplant, Crystal continues to be deeply grateful for his kidney donors, but also for those who helped with the COTA for Hayden M fundraising effort.
“COTA has been walking this journey with us since 2020 when it was determined Hayden would need a second kidney transplant,” Crystal said. “What a blessing it was to have COTA by our side as we navigated numerous days on two types of dialysis and seemingly endless hospital stays while preparing for another transplant.”
“COTA has been a tremendous help specifically with costly medications … constant travel back and forth from Salina to Kansas City … hotel stays … dialysis supplies … countless medical tests and continuous lab work,” Crystal explained. “COTA and our team of amazing volunteers have become our extended family because they all worked together and focused on making sure Hayden received the care he needed.”
She continued, “COTA has been a gamechanger throughout Hayden’s lengthy and costly transplant journey. Hayden will have transplant-related expenses for the rest of his life. When Hayden is on his own, COTA will allow him to breathe easier … and will continue to do so for a lifetime.”
Today, Hayden is feeling relatively ‘back to normal’ after fully recovering from his second kidney transplant. He has walked miles upon miles since his transplant, as compared to periods of time in 2019 when he could not walk down the block without passing out or becoming extremely lightheaded due to blood pressure issues. Hayden loves to hang out with his friends and play the Madden NFL video game. He is currently in high school and starting to think about college and future plans. At this point, his goal is to enjoy each and every day with family and friends and to never take for granted the two kidney donors who are allowing him to dream about a future.
March is designated as National Kidney Month to raise awareness about the prevention and early detection of kidney disease. In the United States, chronic kidney diseases are the ninth leading cause of death. More than 37 million Americans have kidney disease, and many do not know it. There are more than 90,000 people in the United States waiting for kidney transplants; more than 800,000 people suffer with kidney failure throughout the country. In 2023, more than 25,000 kidney transplants were performed here. About 3,000 new patients are added to the kidney waiting list each month; 12 people die each day while waiting for a life-saving kidney transplant. Every 14 minutes someone is added to the kidney transplant list. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor.
