Social Work Month: Jesse's story
Did you know that Children’s Mercy has more than 150 social workers who serve patients and families across all areas of the hospital, in both inpatient and outpatient setting, as well as offering community-based services, child and family mental health services, and outreach clinics via telemedicine?
Social workers at Children’s Mercy help patients and families with psychological, social, and physical health needs. We help patients and families with issues that may impact their activities of daily living and quality of life with supportive counseling, therapeutic support, care planning, community referrals, mental health services, and much more.
Below, read a bit about Jesse's incredible story – one of the amazing individuals our social workers have the privilege of being able to work with every day!
Jesse is 21 and has had chronic kidney disease his whole life. As a result, he’s struggled with various complications and illnesses since he was a really little kid. “We were told he would have to have a kidney transplant at some point,” says mom, Wendy. “Even though you know this from a theoretical perspective, there’s no way to prepare yourself for the actual reality.”
Jesse started dialysis in February 2013. The family thought they were coming in for a more routine appointment, to meet a new doctor, but when they arrived and met with the physician, they were told that Jesse’s kidneys were failing and he would need to begin dialysis. It was a huge blow, but Jesse, Wendy, and Michael, all agree the Children’s Mercy Kidney Center and Dialysis Unit team did a great job of supporting them and helping them adjust to the new reality.
Upon receiving the initial news of needing to begin dialysis, Jesse was understandably discouraged and upset; he “didn’t want to talk and shut down.” The team offered to take him on a tour of the Dialysis Unit, which he was not in the mood to do but agreed to. It was on this tour that he met dialysis technician, Dave Dodson, who would become one of his good friends on the staff team, and who explained what dialysis was and how it worked and helped put Jesse more at ease in a difficult situation. Over the months and years that followed, Jesse developed many significant relationships with the doctors and staff team, including many amazing nurses such as Stephanie Brightman, their transplant coordinator Brenda Brewer, and social worker Kelli Scott.
A particularly challenging time for Jesse and his family was in January 2014, when Jesse was initially a candidate to receive a transplant from a living donor, but was unable to receive the transplant at the last minute due to illness. Jesse was extremely disheartened after this setback, and had a hard time getting back on track and staying hopeful.
“As a parent, it’s difficult to give him control of his health. But at his age, I knew I needed to let him take responsibility for his health; such as managing medications and letting him drive himself to dialysis appointments. Which was especially hard for me – 45 minutes of highway – but it was important,” says mom Wendy. “One of our biggest challenges over the years has been medicine compliance,” dad Michael says. “[Social worker] Kelli stepped in to help keep the process moving forward and be supportive.” One of the things Kelli and Jesse talked about was whether or not he was ready to take responsibility for his health, and for a little while he wasn’t there yet and that was okay. But as soon as he was ready Kelli helped Jesse find solutions that worked for him, such as keeping medicine logs to keep him on track. “Kelli was such a key person for us as a conduit to the medical team,” Wendy says. “I can tell that Kelli cares; that there’s a genuine care for Jesse. He’s here three days a week, four hours a day, and as a parent, that just gives me a lot of peace of mind.” Jesse adds, “Kelli is awesome!”
It has been a long journey for Jesse. “Jesse has had to overcome many obstacles with medication adherence. I have had the opportunity to work with Jesse one on one for the last three years in helping him reach these goals. Due to Jesse’s determination and hard work towards his personal goals, he was able to be listed on the UNOS deceased donor kidney transplant list,” says Kelli. “I had been on dialysis for over four years, and I was starting to lose hope, honestly. I had been on the deceased donor list for six months, but it felt like way longer. I had got to compliance and got on the list and done what I needed to do, but then it felt like things weren’t moving, and it was hard,” says Jesse. He had dreams of going to the University of Kansas in the fall, but with needing to do dialysis so frequently, it just felt too complicated.
“Then at 5 p.m. one day, I’m eating a fruit tray for dinner and I got a call from Brenda [the transplant coordinator]. And all of a sudden, I’m getting all sorts of calls. I call Brenda back and find out that I’m third on the list for a transplant! Brenda says she’ll get more info and call back. We get the call back at 4:45 a.m. I don’t know if anyone slept that night – I know I didn’t! I stayed up all night waiting,” Jesse recounts. “I found out I was #2 on the list, which meant that I would be going to the hospital to begin potential transplant preparations and my chances were good. I came to the hospital to do a dialysis treatment and wait to find out for sure.”
Jesse received his transplant on Wednesday, March 8, and is home from the hospital, and doing very well. Since he found out he was going to receive his transplant he “can’t stop smiling” and his “face hurts from smiling so much.” Jesse is excited about his big plans – he plans to attend KU next year and get a degree in network design.
For more information about social work month, see the Social Work Month Website.