FOR IMMEDIATE RELEASE FOR MORE INFORMATION Kim Carter Parker (kim@cota.org/217.494.6110)
March is National Kidney Month:
An Ohio Teen is College Shopping & Considering a Career in Medicine Thanks to a New Kidney from Her Mom’s Best Friend
March 1, 2023 — 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. An Ohio family knows all too well the life-saving difference a healthy kidney can make and is focused on making sure their daughter’s kidney journey will give hope to a family facing a kidney crisis this month.
When Nadia Khan entered the world in 2005 like a shining light, her much-anticipated arrival increased the Ohio family’s household from three to four. Nadia’s parents, Julie and Faisal, were completely smitten with their three-year-old son, Jacob, and now with Nadia as well. And just two years later when Leena was born, the Khan’s family-of-five life was definitely busy, but also seemingly normal, as all three kids grew and found their strides.
As the Khan kids stepped into their teenage years, Julie and Faisal felt very blessed. And like many families who face an unexpected crisis, the Khans thought they would simply continue down their day-to-day parenting path until the three kids transitioned into adulthood.
That path started to take a dramatic turn in 2019 when then thirteen-year-old Nadia was not acting like her normal, spunky self. In July of that year, she began having extreme nausea to the point of throwing up every morning. Her appetite dramatically diminished, and she was noticeably losing weight. Julie and Faisal made an appointment with the family’s pediatrician to try and determine what was going on. Bloodwork was ordered and
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
in less than 24 hours, those results resulted in a trip to Cincinnati Children’s Hospital Medical Center where a kidney ultrasound had been ordered for Nadia and an appointment with nephrology had been scheduled. According to Julie, “Nadia’s appointment was on a Friday afternoon, July 26th to be exact, and the next thing we knew the doctors ordered a kidney biopsy for the next Tuesday. We were definitely concerned at this point but were hopeful the biopsy would give us answers.”
However, on Monday morning Nadia was throwing up blood. When Julie called to talk to their new medical team, they were told to bring Nadia to the hospital immediately so she could be admitted that afternoon. Arrangements were quickly made with the thought that Julie would stay inpatient with Nadia until her kidney healed from the biopsy and they could return to their Mason, Ohio, home — likely two days later. That plan was quickly upended, as were this family’s lives, when the doctors diagnosed Nadia with Microscopic Polyangiitis (MPA). MPA is a rare type of vasculitis and classified as an autoimmune disease that causes blood vessel inflammation that can lead to organ damage. This disease most commonly affects the kidneys, lungs, nerves, skin and joints. MPA is primarily diagnosed in people in their 50s and 60s, in all ethnicities and in both genders; the cause of MPA is unknown.
The MPA diagnosis was a shock to Nadia and to her parents. Adding to the numbness they were feeling from the news, the medical team at Cincinnati Children’s proceeded to tell them Nadia’s MPA disease had already caused minor lung damage and significant kidney damage. Their first goal was to begin an aggressive treatment plan to get the severe level of MPA under control while trying to preserve Nadia’s remaining kidney function. In a short amount of time, Nadia received IV steroids, seven plasmapheresis treatments, three rounds of chemotherapy, and underwent multiple surgeries, countless infusions, endless blood draws and many pulmonary function tests. In addition, she had strict dietary restrictions, took numerous medications (some with
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
terrible side effects), physical therapy, occupational therapy … and much more. It would be too much for most adults to handle; Nadia was only 13 years old.
Nadia’s kidney damage was so significant that she was diagnosed with End Stage Renal Disease (ESRD) — a diagnosis that came with even more challenging news for this teenager. She would need to begin dialysis and would ultimately need a kidney transplant to survive long term. This was news the Khan family never anticipated when just a few months earlier they had made a doctor’s appointment to address Nadia’s low energy and nausea. But Julie and Faisal jumped into action and were willing to do whatever it would take to save their daughter’s life.
On September 9th, Nadia underwent surgery to have a peritoneal catheter placed for dialysis, which started on September 26, 2019, while she was inpatient. Nadia was released to home on October 7th and placed on peritoneal dialysis in her teenage-themed bedroom … every night … 10 hours each session … until May 3, 2021. According to Nadia, “That was 587 days!”
Julie and Faisal knew they were ultimately facing a life-saving kidney transplant. They also knew the medical costs associated with Nadia’s shocking diagnosis and intense treatment regimen were growing exponentially. On January 8, 2020, the Children’s Organ Transplant Association received an online referral, via COTA Connect, from a transplant social worker at Cincinnati Children’s Hospital and Medical Center asking COTA to reach out to the Khan family who were feeling many stressors with their daughter’s inevitable transplant journey, including financial.
On January 15th Julie called COTA to learn more and to explain Nadia’s situation. The family had private health insurance, which meant they had been dealing with co-pays, deductibles and insurance premiums. Their plan did not cover travel, so they were paying out of pocket for travel, meals, and parking at the transplant center.
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
The family had two other children which meant they needed childcare assistance during every hospital admission and at the time of transplant. Julie also said their preference was a living kidney donor and wondered about those costs as well. Finally, she and Faisal owned their own company and when they do not work … they do not get paid. She therefore asked very specific questions about loss of income during the time of transplant. They were quite satisfied with the answers they received. Just a few days later on January 28th, Julie and Faisal completed and sent their signed agreement to COTA’s Indiana headquarters, and the Khan family officially became part of the COTA Family.
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 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 February 28, 2020, a COTA fundraising specialist traveled to Loveland, Ohio, to train the family’s group of volunteers. 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 for Team Nadia was launched, and the website was immediately available to accept online donations to assist with transplant-related expenses.
“It was somewhat unbelievable to us,” Julie remembered. “A COTA staff member drove all the way to Ohio to meet with us, which was so very helpful. Due to her enthusiasm, our team of volunteers were off to a great start and were very motivated to make the first COTA Challenge Grant goal that is awarded when $25,000 is raised. We decided to meet again in two weeks to put specific plans in place. And then COVID-19 hit. There went the
possibility of our team meeting face-to-face and there went the possibility of in-person fundraisers. But not long
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
into the pandemic, COTA started sharing ideas about virtual fundraisers and our team launched some of those. We are so grateful for the outstanding support our volunteers received from COTA, which was very motivational during a very challenging time.”
On March 12, 2020, Team Nadia blogged on the COTA-provided website: “Today is World Kidney Day! World Kidney Day continues to raise awareness of the increasing burden of kidney diseases worldwide and to strive for kidney health for everyone, everywhere. In hopes of raising awareness and increasing support, please share the story of Nadia Khan, a student within the Mason, Ohio, school system.
Although Nadia’s End Stage Renal Disease (ERSD) was caused by the MPA (Microscopic Polyangiitis) disease, the most common causes in the U.S. are diabetes and high blood pressure ∙ End stage renal disease affects almost 750,000 people per year in the United States. ∙ Some causes are autoimmune diseases (like Nadia), genetic diseases, nephrotic syndrome, urinary tract problems.
∙ Most people are born with two kidneys, but you only need one functioning kidney to live a full, healthy life.
In honor of World Kidney Day, please help support COTA in honor of Team Nadia.
Then COVID-19 crept into Nadia’s treatment and transplant timeline. On April 2, 2020, Julie blogged: With the current outbreak of COVID-19 there is great concern worldwide for its impact on so many different things and with all the unknowns, it makes things even more scary! It was March 25th and we had not left the house in a little over 2 weeks. I was scared to take Nadia anywhere. Her immune system is suppressed, and she falls into a few of the high-risk categories for COVID-19. All of her medical appointments have either been postponed or will be done via Telehealth. However, in mid March Nadia’s labs showed that she would need another infusion to ensure MPA Disease stays in remission. This was not something we could put off. I was a nervous wreck taking her to Children’s. We put on our gloves and masks and as soon as we entered the building we were screened for fevers. Then we headed to the infusion center. Nadia was quite anxious the night before and even during the car ride, but as always, the wonderful nurses put our minds at ease and Nadia’s strength shined through. The infusion went well, and we were home by 5pm. We reminded ourselves of our motto ODAT…One Day at a Time. May is just around the corner and we are on the edge of our seats waiting to start Nadia’s transplant evaluation process.
In addition to COVID-19, another complication the family faced with Nadia’s MPA diagnosis was that a kidney transplant could not commence until her MPA was in remission for one year (11/25/2020 at the earliest) to ensure the disease would not attack a new kidney. In the midst of nightly dialysis treatments, Nadia’s team took an aggressive approach to her MPA with infusions and IV medications, which proved to be the right decision. On May 12, 2020, the Khans were told Nadia’s MPA was in remission and transplant evaluation could begin. It
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
began in June 2020 and lasted through August 2020. Nadia was medically approved for transplant and was added to the kidney transplant waiting list as ‘inactive.’ In August, the family also started the process of searching for a living kidney donor.
Julie, Nadia’s mother, was tested first. To say she was disappointed when she found out they could not continue her evaluation due to a herniated disc in her lower back, is an understatement. But other friends reached out to volunteer to be tested, which was heartwarming for the Khan family.
On February 11, 2021, Julie blogged on the COTA for Team Nadia website: “Celebrating a Milestone and This one is HUGE! On February 5th, Our Living Donor was Approved!!! For the last SIX months, our living donor has been going through the long evaluation process to learn whether or not she’s the perfect match for Nadia. Aside from a variety of medical tests, scans, and lab work she did in her home state, she also travelled to Cincinnati and spent time meeting with doctors and surgeons and having more medical tests, scans and blood work done here. Then, when she got home, she completed additional medical tests. All the while managing a full-time job and taking care of her family. This woman is a wife, mom, sister, aunt and daughter. She is also one of my very best and dearest friends. She’s sincerely genuine, extremely giving, and the most unbelievably selfless woman I know. She’s not just Nadia’s Hero, she’s my Hero too! NOTHING we can say or do will ever … ever be able to express our most sincere gratitude, love and appreciation for our donor and her willingness to give Nadia this second chance.
On May 4, 2021, Nadia received her new kidney, and her second chance at life, from her mom’s best friend. The transplant was textbook. Two days later, Nadia’s donor was released from Cincinnati Children’s Hospital Medical Center and 11 days post-transplant on May 15th, Nadia was released to home. On June 8, 2021, Nadia had one last surgery to remove her stent and peritoneal dialysis catheter.
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 Khans, navigate their transplant journeys … for a lifetime.
Looking back now, nearly two years since Nadia’s transplant, Julie continues to be deeply grateful for Nadia’s living donor, but also for those who helped with the COTA for Team Nadia fundraising effort.
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association® The Trusted Leader Supporting Families … For a Lifetime
“When we were introduced to COTA in January 2020, I thought it seemed like just one more thing to do and asking people for money seemed uncomfortable,” Julie said. “But as we learned more about COTA and after speaking with Rick Lofgren, COTA’s President, plus other COTA staff members, we knew this amazing organization was the right decision for our family. Knowing our team of volunteers would be raising money for COTA in honor of Nadia gave us so much hope and a sense of relief. COTA allowed us to breathe easier during a lengthy and costly transplant journey. Nadia will have transplant-related expenses for the rest of her life and the likelihood of her needing a second kidney transplant is high. When Nadia is on her own, COTA will allow her to breathe easier … and will continue to do so for a lifetime.”
Today, when people ask Julie how Nadia is doing, she typically replies, “It’s complicated but overall, she is really doing well.” There have definitely been bumps in the road since Nadia’s kidney transplant, but she continues to fight through the bumps and keeps pushing forward. Her strength and resilience are simply amazing, and she is growing stronger every day. Nadia is attending school (11th grade) in person, and she is taking honors classes and maintaining a high GPA. Nadia has currently set her sites on college and medical school with a goal of becoming a Pediatric Nephrologist.
“I hope to one day be treating children who are traveling the journey that I did as a child and to honestly say I have been where you are. Hopefully I can put their minds at ease and encourage them to always stay strong,” Nadia said.
Through it all, Nadia has remained strong and focused. Nadia knows that even on the most difficult days, she needs to keep looking forward, keep finding the positives on which she can focus and keep fighting the good fight.
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
Children’s Organ Transplant Association®
The Trusted Leader Supporting Families … For a Lifetime
| March is designated National Kidney Month to raise awareness about the prevention and early detection of kidney disease. In the U.S., kidney diseases are the ninth leading cause of death. More than 37 million Americans have kidney disease — many do not know it. Nearly 100,000 Americans are waiting for kidney transplants. More than 3,000 new patients are added to the kidney waiting list each month; 13 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. |
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
2501 West COTA Drive ꞏ Bloomington, Indiana 47403 ꞏ 800.366.2682 ꞏ kim@cota.org ꞏ COTA.org
