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March 1, 2022 — March is National Kidney Month, which is a month-long, awareness-raising grassroots effort to spread the word nationwide about the importance of kidney health. A Kentucky family knows all too well the life-saving difference a healthy kidney can make.
Arabella Bowen’s arrival in 2005 expanded the Louisville family’s household from three to four when she entered the world like a bright shining light. The family’s life was busy, but normal, as the kids grew and found their strides. That changed, however, in August 2016 when Arabella was diagnosed with a rare kidney disease during an 11-year-old well care exam. The diagnosis? Focal segmental glomerulosclerosis (FSGS), which is a disease that causes scar tissue to develop on the parts of the kidneys that filter waste from the blood. FSGS is an extremely serious condition that can eventually lead to kidney failure.
The diagnosis was unexpected but Rita and Jeff, her parents, vowed to do whatever needed to be done. Mom Rita said the goal at the outset of the FSGS diagnosis was to pursue various treatments to achieve remission of the disease. Those did not prove successful for Arabella and within a year, she was placed on 10-12 hours of peritoneal dialysis nightly in the Bowen’s home.
According to Rita, “Arabella’s case was complicated. We decided to transfer her care to Cincinnati Children’s Hospital Medical Center,
which was more than 100 miles from our home in Kentucky. Within the first six months of dialysis, her catheter flipped twice requiring surgical intervention. Her blood pressure continued to rise and attempts were made to medically kill her native kidneys because they were doing more harm than good. When those attempts were unsuccessful and five daily blood pressure medications were not controlling her high blood pressure, her medical team removed both of her kidneys.”
All of this occurred within just nine months of starting dialysis. Dialysis, hospitalizations and out-of-town travel would soon prove costly. Arabella’s dialysis social worker introduced the family to the Children’s Organ Transplant Association (COTA). She suggested Rita and Jeff look at several organizations to find the best fit for the Bowens to start fundraising for transplant-related expenses. Rita remembers, “As older parents, we were reluctant to move forward, but the social worker’s gentle wisdom reminded us that many people want to help but do not know how.”
On September 9, 2017, Rita placed a call to COTA to learn more about how the organization might be able to help with expenses they would be facing at the time of transplant and well into the future. 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, so 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.
“In the midst of an unexpected transplant journey with our daughter, the unthinkable happened,” Rita said. “I was let go by my employer of 27 years in a reduction of force. My employer was also our family’s health insurance carrier and the decision to let me go was made within three months of me revealing my child had started dialysis. We were losing income from our family’s primary wage earner and we were losing our health insurance while facing the uncertainties of a child on dialysis. Suddenly our social worker’s promptings made perfect sense.”
COTA received the family’s paperwork on May 31, 2018, and the Bowen family officially became part of the COTA Family.
On June 28, 2018, a COTA fundraising specialist trained the family’s volunteers in Louisville. The COTA staff member talked about COTA’s fundraising strategies (virtual and face-to-face) and shared information about fundraising templates, fundraising guidance and the no-cost website the volunteers and family would be given for fundraising and promoting Arabella’s journey. This group of friends quickly got to work raising funds for COTA in honor of Arabella to help with expected transplant-related expenses. These COTA volunteers worked nonstop to promote online giving and virtual fundraising opportunities and to implement creative COTA fundraisers that surpassed their fundraising goal and generated more than $113,000 for transplant-related expenses.
It was also in late June 2018 when Arabella had her transplant evaluation. By the end of the summer, the family received some good news — Rita was approved to be Arabella’s living donor. By October, Arabella’s condition had worsened; her medical team wanted to start hemodialysis in addition to her regular peritoneal dialysis. The decision was made for Arabella and Rita to relocate to an apartment in Cincinnati while Jeff and their son continued with their lives in Louisville.
On December 18, 2018, Arabella received her new kidney … and her second chance at life … from her mother. Since becoming part of the COTA Family earlier in 2018, Rita regularly blogged on the COTA for Arabella website to keep their family members, friends and COTA supporters in Louisville connected to what was happening in Cincinnati. On January 1, 2019, Rita posted this message:
Seasons of Love — Seasons of Love, a song from the Broadway musical Rent, starts with “Five hundred twenty five thousand, six hundred minutes. Five hundred twenty five thousand moments so dear. Five hundred twenty five thousand, six hundred minutes. How do you measure, measure a year?” The end of the song says, “Remember the love. Remember the love. Remember the love. Measure in love. Measure, measure your life in love.”
We are starting a new year today. One that promises to be vastly different from our last one, but with a new set of challenges. If I summed up 2018, I would say it was the year I lost my job, gave away a kidney and gained perspective. Arabella, when asked, said 2018 was a pretty crummy year, but December pulled through. In the end, if we measure our year in love, it was an amazing success. We have never felt as supported by the people in our lives as 2018 showed us. Our goal was to get Arabella to transplant in 2018. On December 18, we snuck in just under the wire. As her living donor, I had surgery at the University of Cincinnati and my kidney was carried across the street to Cincinnati Children’s Hospital Medical Center, where Arabella was waiting in the operating room. Happily, all went well. I was discharged from the hospital the following day and Arabella was discharged on December 27.
Unfortunately, a kidney transplant is not an easy adjustment. After fighting extraordinarily high blood pressure for over a year (she was on five daily blood pressure meds and ultimately even had her kidneys removed to try to control it), Arabella is now suffering from low blood pressure. The drinking limit of 34 ounces per day has been replaced by the need to drink no less than two liters of fluid every day or face increased lab values. The leg aches that disappeared with dialysis have returned, but she can no longer use Epsom salt or magnesium spray because it could affect her post-transplant magnesium levels.
At this time, Arabella and I are pretty much quarantined to our Cincinnati apartment for the next six weeks. We have to be extremely careful during this period because, although she will be on immunosuppressants the remainder of her life, she is on the highest doses right now. These medications suppress her immune system so that it does not recognize my kidney as foreign and fight it. The downside is that she cannot fight any other germs either. When we go outside the apartment, she wears a mask to minimize exposure to germs.
All the things Arabella is experiencing are routine for transplant recipients. The reality is that ‘true’ normal is part of our past. We are adjusting to a new normal. And for as long as Arabella’s kidney lasts, it is a normal without dialysis. When she wants to go to sleep at night, there is no setting up her machine and connecting, just falling into bed. We are adjusting to Arabella having a kidney … which is a good problem to have. She has traded her old meds for new ones. The first year post-transplant is supposed to be the hardest.
We are entering into a new season. A new year with a different measure. We want to make our minutes count and we are thankful for your continued love. We feel blessed that things are going so well and we look forward to 2019. How do you measure a year? Remember the love.
On April 10, 2019, Arabella’s transplant team approved her return home to Louisville. It was a mixed bag of emotions for Arabella and Rita, but they were relieved knowing Arabella’s new kidney was working so well that ‘home’ would now be with the rest of their family in Louisville. However just 16 days after returning home, Arabella was diagnosed with PTLD, a rare form of post-transplant lymphoma. She was seen by an oncologist and embarked upon a series of weekly and then monthly infusions of a chemotherapy agent. By August, Arabella had finished the unexpected, transplant-related treatment.
Unfortunately, Arabella’s post-transplant journey has continued to be complicated. Plagued by uncontrolled high blood pressure during kidney failure, immediately following transplant she had extremely low blood pressure. Arabella has been diagnosed with dysautonomia since her kidney transplant. Dysautonomia is a condition in which the autonomic nervous system does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels.
At the end of 2020, her creatinine level began to rise which meant kidney biopsies were performed on Arabella in January 2021 and March 2021. Both showed damage to her transplanted kidney from the anti-rejection medications she is required to take.
Some good news for the Bowen family? COTA funds are there for a lifetime of transplant-related expenses.
“COTA has been the perfect way that our friends could help … and the help has been very much needed and appreciated with the ups and downs of Arabella’s transplant journey,” Rita said. “When our COTA team of volunteers met the fundraising goal just six months after getting started and just before our transplant, it was if a very large weight had been lifted.”
She continued, “Having a teenager who needs a life-saving transplant brings considerations that most young people and their families never have to address. For our family, the fact that COTA funds are available for a lifetime of transplant-related expenses was the turning point in our decision. Arabella’s life will always have more costs than her healthy peers. Knowing that COTA funds help ease the financial burden of a transplant now and will do so well into her future is worth its weight in gold us to us, her parents.”
“Medical debt is a big stressor. That is on top of the stress that comes from caring for a chronically and critically ill child. And everyone in the family is affected by medical costs and bills because it changes the way your entire family lives. With COTA, we know our load, and eventually Arabella’s load, is not as heavy,” Rita said.
Today Arabella is taking life one day at a time. She loves knitting, going to theme parks and training dogs. As she starts to think about life after high school and looking at universities, Arabella is quite interested in pursuing a career where she can be an advocate for teenagers in the disability and chronic illness communities.
One of Rita’s last blogs on the COTA-provided website summed up things this way:
It is impossible to understand this life without living it. There are assumptions that all will be better following a transplant, but that is a fallacy. Transplant is not a cure, but a different treatment modality. Arabella will always be different from her peers. She tries to be the same but at the end of the day, her concerns are different than the average 16 year old. When she thinks about colleges, she thinks about how quickly she could get back to Cincinnati in an emergency. When she starts living on her own, she will need to consider living close to excellent treatment facilities and getting a job that affords good health insurance. Her world, and ours, look a lot different now.
March is designated National Kidney Month to raise awareness about the prevention and early detection of kidney disease. In the United States, kidney diseases are the ninth leading cause of death. More than 30 million Americans have kidney disease, and many do not know it. There are more than 95,000 people waiting for kidney transplants, with close to 600,000 people in the United States suffering with kidney failure. 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.
