May is National Cystic Fibrosis Awareness Month
May is National Cystic Fibrosis (CF) Awareness Month. More than 30,000 adults and kids in the United States have CF. In Georgia, a CF survivor is currently winning her 35-year battle with the disease -- thanks to her life-saving double lung transplant. On May Day (May1), she and her husband will be celebrated her 40th birthday and ‘transplantaversary.’
More than 10 million Americans are symptomless carriers of CF and 1,000 new cases are diagnosed each year. CF causes thick mucus to build up in the lungs, which over time leads to sinus issues, difficult food digestion and permanent lung damage due to constant infections. For Bonnie Griner of Moultrie, Georgia, these statistics and these challenges have been her reality since she was diagnosed with CF at the age of five. This month’s celebration of her 40th birthday and her new lungs is a milestone for Bonnie and her husband, Nick Chastain.
“I was born with CF and I grew up knowing a transplant would probably be somewhere in my future. ‘The transplant’ was always talked about as being down the road, not now, sometime far away,” Bonnie said. But ‘the future’ became a reality in December 2016 when for the first time in her CF battle, Bonnie was put on oxygen while her CF specialists at Emory University Hospital in Atlanta began to research transplant centers that would potentially accept Bonnie for a transplant evaluation.
In early 2017 Bonnie received the news that Duke University Hospital in Durham, North Carolina - 525 miles away from their home in Moultrie - would do two weeks of testing to see if she would be admitted into its transplant program. While overjoyed, both Bonnie and Nick started to wonder how this next step in her transplant journey might financially impact their family. On February 3, 2017, Bonnie called COTA (Children’s Organ Transplant Association) to learn more about fundraising for transplant-related expenses. On February 16th a COTA fundraising specialist travelled to Moultrie to train a very large group of friends and family members and walk them through the entire fundraising process.
COTA uniquely understands that parents/spouses who care for a child or 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 community 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 these COTA funds are available for a lifetime of transplant-related expenses. Within days of their on-site training, the COTA team in honor of Team Bonnie G was off and running, planning fundraisers and receiving guidance from COTA’s team of professionals. These amazing COTA volunteers named themselves the Bonfighters.
While the majority of COTA patients are children and teenagers, there are a significant number of adults working with COTA -- especially those diagnosed with Cystic Fibrosis early in life who can wait for years to qualify for a double lung transplant. In Bonnie’s case, it was Nick who was at her side when the time came to start the transplant process. Recently Nick sat down and shared these thoughts about Bonnie’s transplant journey to date, a journey he has shared with her for many years.
“COTA was an organization I was not familiar with prior to late 2016. Bonnie’s lung function was deteriorating quickly. Her infectious disease specialist put it to us plainly, Bonnie needed a lung transplant. Without getting into too much detail, he explained the odds we were up against, the timelines associated with the procedure and the urgency of Bonnie’s situation. Once we started scheduling our pre-transplant evaluations, we had to figure out the logistics of travel, accommodations, and my lost work time. We did not have disposable income for hotels, gas, and meals away from home. Luckily at that point in our journey, we had some relatives who helped us financially so we could travel to these preliminary meetings. My wife, in her infinite wisdom, bought me a book that was written by a CF spouse. When I read it, I cried. I nearly had a panic attack. I worried and then I cried some more. The author of the book, Ray Poole, likely saved us from financial ruin because he explained the concept of fundraising for transplant-related expenses in a way that I could understand it and feel comfortable proceeding with.
Friends and family want to do something, but often do not know how to contribute without adding more stress. The book explained how COTA was structured, and I suddenly had a sliver of hope. Up to this point I was preparing myself for the eventual sale of our home, resignation from a job I loved, and the prospect of seeking part-time work to afford an apartment near the hospital she chose for the transplant. These thoughts were the source of many nightmares and sometimes caused me to experience unbearable waves of anxiety, stress, and depression.
One evening in the early months of 2017, I mentioned COTA to a group of our friends who had gathered at our home. I was not sure how one should go about seeking an individual willing to take on the responsibility of running the fundraising effort. After some discussion about COTA (with the very limited knowledge I had), I brought up that crucial first piece of finding a leader. From one of the most unlikely mouths came the words I will forever remember, ‘I’ll do it,’ said Lacey Herndon, who would become our COTA Campaign Coordinator. I honestly did not know her that well; I knew her husband much better. I had no idea the blessing, and miracle, her words would be for Bonnie and me. Fast forward a few days and Lacey showed up at our house with a binder full of information, a contact name and phone number from COTA. I read all of the information and then had an informative call with COTA’s Family Services Team. I was blown away by the things I learned.
Basically, the life we had built together would survive this process. I would not lose our house. I would not have to wait tables in Durham while Bonnie was inpatient. I would not have to sell my plasma at the blood bank in order to get a decent meal. All of my worries and anxiety trigger points were explained and eliminated, one by one, by COTA staff members.
Once they got started our COTA Bonfighters were unstoppable, which was a blessing. March 2017 was complete chaos for us. Bonnie was on five liters of oxygen and tethered to an oxygen concentrator. I had to navigate the process of explaining to my superiors the transplant relocation requirement and then I had to figure out how to apply for an unpaid leave of absence. Once Duke accepted Bonnie, I had to search for an apartment in an unfamiliar town 10 hours away. And then, boom! The credit card bill arrived from our pre-transplant evaluations. Bonnie and I had not been on a vacation that included a hotel stay in years. The bill almost put me back in panic mode. It was more than I brought home in a month. Then I remembered COTA and reached out. I was assured that COTA funds were able to be used for transplant-related expenses like hotel rooms, meals and mileage. That day, COTA provided me with the first of many, many, many ‘miracle moments’ of thankfulness.
At the end of March we relocated to Durham, North Carolina. Our modest apartment was clean and near the pulmonary rehab center Bonnie visited daily. The rent was more than our mortgage. And our mortgage payment still had to be paid. And I was on unpaid leave from work. The COTA team was there for every problem that came up, for every concern I had and for every decision concerning transplant-related expenses. COTA allowed me to focus all of my energy on Bonnie and her path to transplant. My mortgage payment was made on time, we were able to pay rent every month, and the calorie-rich meals Bonnie required were purchased.
Meanwhile, back in South Georgia, the Bonfighters were on fire. Their fundraising efforts were exceeding all expectations. Our COTA volunteers were able to raise more than $150,000 for COTA in honor of Bonnie in a short amount of time. We were not able to attend even one fundraising event held in Bonnie’s honor. We will be forever indebted to the Bonfighters and our community of Moultrie. And we will be forever grateful to COTA for remaining constant in their support and unwavering in their commitment to provide financial peace of mind during a grueling, agonizing, life-saving, and (let’s face it) expensive time in our lives.”
Bonnie received her new lungs, and her second chance at life, on her birthday, May 1, 2017. She remained inpatient at Duke for five weeks and was then released to move back to their transplant housing apartment. She began post-transplant rehab, which she completed in August. She and Nick were then cleared to move back to Georgia to begin their new post-transplant chapter together.
“Since her life-saving transplant Bonnie and I have traveled to Duke about once a month. Our minimum monthly stay is three days. Meals away from home, parking at Duke, time missed from work are just some of our monthly realities. The financial requirements of Bonnie’s transplant journey are still well above the amount I earn as a school teacher. COTA has been there for every trip, every expense and every curveball we have encountered. Every staff member at COTA passionately helps transplant families weather the storm of uncertainty. They are steadfast in their commitment to support, guide and help transplant families.
COTA was also instrumental in helping the Bonfighters design compliantly worded posters, invitations, and tickets for fundraising events. COTA staff members trained our volunteers on how to collect, report and disperse funds for fundraising expenses. The Bonfighters put in the sweat, tears and time to make the community campaign a success. Their ability to follow the process with fidelity is due in large part to the training provided by COTA, which was provided at no expense to anyone associated with the COTA in honor of Team Bonnie G team.
COTA President Rick Lofgren visited Bonnie in person while she was still inpatient at Duke. COTA simply handled so many of our worries.
COTA gave our community and friends a ‘coping outlet’ during a time of worry and distress. COTA is the epitome of what a charitable organization can and should be. Sound leadership, dedicated and knowledgeable staff members, and an unwavering commitment to the mission of the organization: The Children’s Organ Transplant Association helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA does that and so much more.”
Bonnie’s transplant recovery, and journey, continues. She is extremely thankful for the new life that has been given to her and says her post-transplant life is more than she ever dreamed it would be. Bonnie is hoping to one day meet her donor’s family and let them know how thankful and grateful she, Nick and the Bonfighters are for the selfless decision they made. Recently Bonnie shared with COTA that she is the Event Coordinator at Ashburn Hill Plantation in Moultrie. She is thrilled to report this is the first time she has been able to work in 12 years and it feels wonderful.
As she looks back over the past two years, Bonnie said, “From the moment we heard about COTA we had hope. Before we knew COTA existed we were so worried about how we would ever be able to pay for a double lung transplant and relocation to another state and medications and the list went on. Once we started working with COTA our financial fears were gone. Without the support and guidance from COTA, I would not have been able to receive this transplant. It is very comforting to know COTA will be there to answer any questions and help in any way possible, for a lifetime.”