August 1, 2023 — August is National Minority Donor Awareness Month. This national observance (first a day and then a week) was initiated in 1998 to increase our nation’s consciousness of the need for more organ and tissue donors from multicultural backgrounds. In 2020, this nationwide effort to engage and educate multicultural communities about the need for organ and tissue donors was expanded to encompass the entire month of August.
National Minority Donor Awareness Month honors communities of color who have been organ and tissue donors and encourages others to register as donors. It is about empowering multicultural communities to save and heal lives. Although organs are not matched according to ethnicity, and people of different races frequently match one another, individuals waiting for a transplant will have a better chance of receiving an organ if there are large numbers of donors from their ethnic background. This is because compatible blood types and tissue markers (critical qualities for donor/recipient matching) are more likely to be found among members of the same ethnicity.
COTA’s McRavin/Longmire family of New Bern, North Carolina, knows these facts all too well.
Jazlyn McRavin was born in July 2000 and was instantly wrapped in love by her parents. She had a brother who was quite a bit older, so Baby Jazlyn quickly became the center of her parents’ world. Mom Katrina remembers Jazlyn’s beautiful eyes, but also remembers that as she moved from infant to toddler to teenager … Jazlyn was often sick. Jazlyn’s younger years were plagued by never-ending vomiting, constant and intense fatigue, crippling joint pain, and other illnesses that she seemed more susceptible to than her peers. In addition, Jazlyn had been born with a left hand that was not fully developed. Katrina remembers numerous doctors’ appointments, checkups and prescription medications that dominated Jazlyn’s younger years. Many medical appointments and interventions, but no real answers to what was causing this little girl to suffer more than her peers.
The answer came in 2014 when Jazlyn was attending high school at Craven Early College. Fourteen-year-old Jazlyn was diagnosed with Systemic Lupus and Lupus Nephritis. Systemic Lupus is an autoimmune disease that results in the immune system attacking its own tissues, which can result in inflammation and tissue damage and almost always impacts a patient’s joints, skin, lungs, blood vessels … and kidneys. Lupus Nephritis, inflammation of the kidneys, is caused by systemic lupus.
Jazlyn reflects, “I was always sick — like almost every day of middle school, but no one really had solid answers for Mom and me. I was always sick, but the thought was that I was just really susceptible to viruses. Each time I was taken to the ER, we were told it was either E. coli or the flu. I remember being so frustrated even at a young age thinking I could not be getting the flu every month! And I was so tired of missing many elementary and middle school days. Then during my freshman year of high school, my pediatrician figured it out.”
She continued, “My eventual diagnosis was a challenge for my medical team because I never had typical lupus symptoms. I did not have a butterfly rash, which is the main thing doctors look for to diagnose this disease. The answer came once a kidney biopsy was ordered and it was very apparent that lupus was attacking my body. I had terribly high blood pressure and was prescribed medication to decrease it and I was prescribed immunosuppressant drugs. My medication schedule, and the side effects of the different drugs, made it nearly impossible for me to sit at a desk and attend high school.”
At this stage in her lupus battle, she was experiencing immense joint pain; one night Jazlyn could not walk at all. A trip to the ER found no reason for this. Her wrists were aching, but that was attributed to the amount of typing and writing she was required to do in her college prep high school. In Jazlyn’s words, “2015 was not that bad. There was nothing I could really do but to treat the pain with Tylenol. When the pain would pass, then I would walk or study or do whatever needed to be done.”
Also in 2015, her nephrologist in New Bern decided to relocate. Jazlyn’s care was transferred to a nephrologist at UNC Hospital in Chapel Hill, which was a three-hour drive for Jazlyn and Katrina. Upon arrival for her first nephrology consultation at UNC, Jazlyn learned she would be undergoing extensive testing that included a kidney biopsy.
Katrina and Jazlyn’s six-hour round trips to UNC Hospital continued twice each month. At this point in Jazlyn’s journey, her medical team believed her kidneys were going to be OK but they wanted to continue monitoring her lupus. In her free time and when she was feeling up to it, Jazlyn started researching lupus. One evening, she decided to do an Internet search to see if there were any celebrities who shared this diagnosis with her. The first name she found was Selena Gomez; Jazlyn was quite intrigued because she had watched her in Disney Channel shows for years. Jazlyn then learned that Selena Gomez also was diagnosed with Lupus Nephritis and had basically followed a similar treatment path to Jazlyn’s … steroids at a young age, weight fluctuations, unexplained illness and more. Jazlyn describes Selena Gomez as her ‘beacon in the night.’ Being able to share a similar journey with this superstar gave Jazlyn hope so she decided to continue following Selena’s disease progression. Then in June 2017, Selena Gomez received a kidney transplant from a living donor and bounced back very quickly to a relatively pain-free life. Jazlyn remembers quickly finding her mom and sharing this news. She asked, “Mom, what if I need a kidney transplant like Selena Gomez?” Katrina, knowing the amount of time Jazlyn had spent researching Selena’s struggle with lupus, calmed Jazlyn down and said, “Don’t think like that. It probably won’t get to that point with you.” While at the time, that answer made sense to Jazlyn, this was truly a turning point in Jazlyn’s journey. It was Selena Gomez who opened the door for her to start thinking what it might be like to have a ‘normal’ life.
Jazlyn’s life was certainly nothing like normal at this point in her journey. “I was trying to finish high school and earn community college credit at the same time,” Jazlyn said. “I missed so many days of school towards the end of my high school career. But everyone wanted me to succeed. It was very motivating. However, during 2019 I began to have serious issues with walking. I did not want to quit school because I was so close to finishing. My advisor helped me move to all online learning from our home; it was the perfect solution for me, but I really wanted to be able to attend school and participate like my peers.”
In May 2019, Jazlyn earned her high school degree, an Associates in Art and an Associates in Science from Craven Early College all at the same time. She had achieved her goal of completing high school and community college in tandem — all while dealing with excruciating pain and six-hour round trips to Chapel Hill for her medical care. Jazlyn remembers, “Luckily graduation day was a good day for me. I was able to walk across the stage to get my diploma and degrees and I did not have any lupus-related nausea that day. I felt like my life was back on track and I was very excited about leaving for college in just a few months.” Jazlyn had been accepted to attend the University of North Carolina Wilmington to study biology and she had earned an amazing scholarship.
In August 2019, Jazlyn’s dream came true. Katrina and Jazlyn packed the car and moved her into on-campus housing at the university, which was about 100 miles from their home. College life started out great for Jazlyn. She very much enjoyed living away from home and sharing space with three roommates. Freshman year was going strong for her academically; she had even started physical therapy to help strengthen her leg endurance because nothing was going to stop her now.
But two months into her freshman year, Jazlyn’s disease took center stage once again. Jazlyn had gone grocery shopping and was carrying a case of water bottles up a flight of stairs to her university housing when an intense pain shot down her back and through her leg. She thought she had pulled a muscle and simply continued putting away her groceries and headed to class. By the end of the week the pain was unbearable, and she had to be picked up and driven home to New Bern. After a couple of days at home she started vomiting and could not breathe. She called Katrina at work and said, “I think I need to go to the ER.”
By the time they arrived at the ER, Jazlyn was unable to walk and was desperately struggling to breathe. Katrina had to request a wheelchair to get her inside the building. Tests were run and x-rays were taken. Jazlyn remembers the silence in the room. Her lungs were filled with fluid. Adding to Jazlyn’s confusion was that the specialist in her exam room was not a pulmonologist, but a nephrologist. The thought was she likely had pneumonia, but Jazlyn remembers hearing these frightening words, “Looks like your lupus nephritis has come out of remission and now we need to closely watch your kidneys.” In the end, however, it would be the pneumonia that would not allow Jazlyn to return to her college campus. She applied for a medical leave and went home to live with Katrina. The two were determined to figure out how they could manage Jazlyn’s health crises moving forward. Jazlyn did not fully heal from the pneumonia until January 2020. During this time, she was diagnosed with avascular necrosis of the wrists and hips due to the high doses of steroids that were used to control her lupus-related symptoms.
The winter months of 2020 were very tough for Jazlyn. By 3:00 pm every day she was so tired that many times she went to bed. She was always drained and had no energy. Jazlyn experienced facial swelling, hair thinning and eventual hair loss. Her condition worsened and by February 2020, Jazlyn was extremely ill. When she could not even eat Jell-O, Katrina took her to the ER. She was so dehydrated that an IV had to be placed in her neck. Katrina’s frustration and fear were mounting, and the local hospital staff sensed Jazlyn needed a higher level of care. On February 27, 2020, she was taken via ambulance to UNC Hospital in Chapel Hill.
During her second day of testing and care at UNC, Jazlyn heard the words she had dreaded and feared for a very long time — acute kidney failure. Jazlyn had very few treatment options. The medical team said they could attempt an IV infusion to try and save the kidneys, which one of the doctors said could cause fertility issues. “My head was exploding,” Jazlyn remembers. “I was 19 years old. I did not want to think about freezing my eggs. I cried a lot during this stay in Chapel Hill. I did not think I should have to worry about this at age 19. My legs and feet were super swollen and huge. I could not sit up in the hospital bed because my stomach was so swollen. I was in horrible pain and when they started talking about dialysis, I really did not even know what that was. I was supposed to be at my university attending college classes, not inpatient worrying about my kidneys not working!” She also remembers there were lots of tears.
Jazlyn vaguely remembers signing a consent form for the placement of a catheter. Her next memory is being put on an operating room table and a surgeon asking for her preferred music. She thinks she said, “Beyonce.” Her next memory of this day is waking up with a dialysis catheter surgically inserted in her chest. And being hooked up to dialysis. Dialysis day one was March 2, 2020. On the second day of dialysis, Jazlyn was more awake post-surgery and remembers sobbing uncontrollably as she watched her own blood flowing through the catheter embedded in her chest. Jazlyn spiraled into a deep depression.
She said, “I only did dialysis at UNC Hospital three times. Then I was sent home to New Bern with mom where I had to be taken three times a week to a dialysis center. Mom had to miss so much work. Sometimes other family members would take me. I cried all of the time. It was such a shock. I was the youngest person in the dialysis center, and I definitely did not want to talk to anyone. I could not believe I came home from college with a pulled muscle and here I was in kidney failure with a see-through catheter in my chest. I was super depressed. Then add COVID-19. My first couple of dialysis sessions were prior to the pandemic so at least I could see faces and Mom could be with me. THEN COVID! Mom had to stay in the car while I was on dialysis … everyone had to wear masks … sometimes I felt like I could not breathe. My whole life consisted of resting at home and then being masked and taken to dialysis. Rinse and Repeat. COVID meant no school … COVID meant very few people could be around me … COVID felt like the world was closing in on me all while knowing my kidneys no longer worked.”
In July 2020, Jazlyn was officially listed for a kidney transplant. But sometimes people of color have a longer wait time to find a deceased donor organ that is a good match. While Jazlyn was hopeful, she knew she could be on the kidney waiting list for some time. As she waited, she remembers at least eight different trips to surgery to replace her chest catheter due to a myriad of infections she was constantly fighting. The chest catheter was extremely painful; Jazlyn’s depression turned into desperation. She felt no one understood her anguish.
Jazlyn’s crisis was also impacting Katrina, who was juggling the rigors of her work with the New Bern Police Department, a younger daughter who was still at home and Jazlyn’s dialysis coupled with deep depression. Katrina was also worried about how she was going to manage the staggering medical bills that had been accumulating for more than a year. Now that Jazlyn was officially listed for a kidney transplant, she knew she was going to need some financial assistance. Over the course of many visits to UNC, Katrina had received a bagful of information from a transplant social worker. She had put it in a pile until she could find the time to read everything. The time had come. One of the brochures was from the Children’s Organ Transplant Association (COTA). In early August she completed COTA’s Get Started online link (https://cota.org/get-started/) to learn more about how COTA might be able to help. Two weeks later, Katrina remembers a very helpful telephone call with COTA’s Family Outreach Specialist who answered her questions and talked about fundraising for transplant-related expenses. Katrina felt an instant sense of relief after this conversation, but she was still juggling too many issues to take the necessary steps to move forward with COTA.
Jazlyn survived the ups and downs of dialysis for a year. She also tried home dialysis, which required another surgery — this time for a stomach catheter. After two months of home dialysis, it was discovered Jazlyn was allergic to the solution that was used, and she had to return to the dialysis center for her treatments. The only upside, in Jazlyn’s opinion, was her chest catheter had not been removed so she could start immediately without another surgery. During this time, she also endured three surgeries to get a dialysis port placed in her arm. At this point, Katrina, a single mother, thought this might go on for a very long time, and all of these procedures and treatments and medications came with out-of-pocket costs. She thought again about COTA and remembered the information she had reviewed and the telephone conversation. Katrina knew what she had to do.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child 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 to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On March 8, 2021, Katrina completed and sent their signed agreement to COTA’s Indiana headquarters, and Jazlyn’s family officially became part of the COTA Family. Another solid decision Katrina had already made was to ask a New Bern Police Department officer, and her work colleague, to lead the COTA fundraising effort. Katrina had kept Jazlyn’s health care situation primarily to herself so most of her police force colleagues did not even know what she was managing at home, in addition to her duties at work.
On March 23, 2021, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19 and so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Jazlyns Fight was launched, and the website was immediately available to accept online donations to assist with transplant-related expenses.
Once the word was out about Jazlyn’s transplant journey, Katrina’s communities of support surrounded them with care and contributions to COTA. And within a very short amount of time and under Community Coordinator Greg Smith’s leadership, the COTA for Jazlyns Journey fundraising effort surpassed the team’s $30,000 goal. Greg and his team of COTA volunteers organized a church spaghetti drive, worked with a restaurant to sell hot hamburger plates, placed COTA Coin Boxes in locally owned businesses throughout New Bern, organized a very big gospel concert in a local park and did so much more. The team’s dedication, and the community’s support, felt like huge arms of love encircling both Jazlyn and Katrina during very challenging days.
Transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatments and monitoring. COTA exists to help families, like the McRavins, navigate their transplant journeys … for a lifetime.
By May 2021, Jazlyn had been on dialysis at home in New Bern for a year. She desperately wanted to return to her collegiate life and restart her academic program. Jazlyn continued to be very aware that finding a deceased donor kidney match was a challenge due to several factors including ethnicity. One night in the midst of her frustration with dialysis and being unable to return to college, she posted on Instagram that she was in kidney failure and needed a kidney. She even left a phone number for anyone in her Instagram sphere to call to learn more about testing. Something powerful and uplifting happened. Jazlyn’s best friend since the age of seven, Eva McKeon, responded and wanted to be tested. But she was not 18 at that time. When Eva turned 18 in October, she went to be tested to see if her kidney would be a match for her best friend. Jazlyn started to see a glimmer of hope peeking through the darkness.
“It was Mom’s birthday (November 10th) when I got the call that Eva was a match,” Jazlyn said. “I cried. I kept thanking her over and over. I was in the car with Mom when I answered the phone and we cried together. Then I texted Eva repeatedly to thank her. It was up to Eva to set the date since she was attending college in Winston Salem at the time.” The living donor kidney transplant was set for December 21, 2021, when Eva would be home for Christmas break.
Jazlyn vividly remembers the morning of transplant day. Due to the pandemic, her transplant team did not want her or Eva to be inpatient any longer than necessary. The living donor kidney transplant was textbook. Eva was released to home in just two days. And on Christmas Eve (three days post-transplant), Jazlyn was released to home. Both girls were with their families on Christmas morning; Jazlyn remembers the best gift that year was knowing she did not have to return to the dialysis center.
According to Katrina who was by Jazlyn’s side for all of the ups and downs of this journey, “Knowing that COTA was there made everything easier for us. I did not lose my house and I was able to take care of Jazlyn’s younger sister’s needs as well. COTA allowed us to have food at our house and food at the transplant center. COTA ensured I could put gas in the car for so many dialysis appointments while we waited for the perfect kidney. All of the prescription medications. Even Eva’s room in Chapel Hill when she went to donate her kidney … all of it. I am not sure what we would have done without COTA.”
Jazlyn, now 23, recognizes the importance of the COTA campaign. “I kept saying a transplant does not last forever, which has been a big fear for me. How in the world would I ever be able to pay for all of this if/when I need another transplant if I did not have COTA? It is so reassuring to know I will be able to afford all of my medications. I know I will have gas money when I need it for appointments. With COTA, I know I will be able to manage the financial aspects of living life with a healthy kidney and will be able to do so for a lifetime.”
Since the transplant, Jazlyn has experienced some bouts of rejection. She had one hip replaced earlier this year, and had her second hip replaced just a few weeks ago. These transplant-related hip replacements have been necessary due to the steroids that were used to manage her lupus, which is what caused the need for her new kidneys since she was born.
Jazlyn is currently planning to return to the University of North Carolina Wilmington in Spring 2024 to resume her collegiate studies. She has been told her scholarship is waiting for her. The only difference this time is her course of study. Jazlyn now wants to pursue a degree in clinical research with a clear goal in mind … she wants to find the cure for lupus.
Good Luck, Jazlyn … Your COTA Family is Cheering You On!
August is National Minority Donor Awareness Month. Many COTA families are waiting for their children and young adults to be matched to an organ or tissue donor. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 17 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
