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May is National Cystic Fibrosis Awareness Month: Thanks to a Transplant, a New York Mom is Winning Her Battle

COTA Patient Allie Davis
Lung Transplant Recipient

May is National Cystic Fibrosis (CF) Awareness Month. More than 30,000 adults and kids in the United States have CF. In New York, a CF survivor is currently winning her 32-year battle with the disease — thanks to her life-saving double lung transplant. Her transplant is not only allowing her to breathe easier, it is also the reason she will be celebrating a very special Mother’s Day this year with her three-year-old son. 
 

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. CF is a genetic disorder that primarily affects the lungs, but also the pancreas, liver, kidneys and intestines. There is no known cure. 
 

For Allie Davis of Spencerport, New York, these statistics and these challenges have been her reality since she was diagnosed with CF when she was a baby. 

“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,” Allie said. But ‘the future’ became a reality in December 2017 when she came down with a cold that developed into a full-blown CF exacerbation. On New Year’s Eve, Allie was admitted to Highland Hospital in Rochester, New York, where she was quickly transferred to the ICU and intubated. 
 

Allie’s mother, Valerie, was very worried watching her daughter struggle to breathe in her hospital bed. While many things were uncertain at this point in Allie’s journey, Valerie was keenly aware it was now time for donor lungs to be found. Valerie also knew this part of Allie’s transplant journey would come with many transplant-related expenses. At Allie’s bedside, Valerie started researching fundraising options and found COTA.org. On January 4, 2018, Valerie, a nurse practitioner, emailed COTA regarding the family’s need to quickly start a fundraising effort. Her initial questions were answered; COTA received the patient agreement on January 18th and Allie quickly became part of the COTA Family. 
 

The Children’s Organ Transplant Association (COTA) works with individuals of any age with single gene disorders, such as Cystic Fibrosis, Polycystic Kidney Disease and Sickle Cell Anemia. 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. 

Allie’s mother-in-law, Maria, and her sister-in-law, Kristina, wanted to do absolutely anything they could to help so they became the lead COTA volunteers for the fundraising effort that was being launched in Allie’s honor. Instead of sending a COTA representative to Allie’s hometown to train the volunteers face-to-face, a lengthy teleconference was held so the volunteers and Allie’s mom could fully understand how COTA could help and what the team’s next steps needed to be. Within days of their conference call training, the COTA team in honor of Allie D was off and running, planning fundraisers and receiving guidance from COTA’s professionals. 

On January 24, 2018, Allie was transferred to the University of Pittsburgh Medical Center, approximately 400 miles from home with her mother and fiancé, by her side. Allie’s health was extremely compromised by the time the decision was made to move her to Pittsburgh. 

Valerie immediately started working on the COTA in honor of Allie D website from her UPMC bedside. She wrote the following summary for the home page: “Allison is currently too sick to write about herself so we are taking the liberty to share her story. Allie was diagnosed with CF at 18 months old. She has had countless hospitalizations over the years and does multiple daily treatments to delay the inevitable loss of lung function. Despite the toll her disease takes on her, she lives life with passion and full of love for her family and friends. Allie is always the first person to help others in need. The time has come where she needs a lung transplant. Her deepest wish is to see her 11-month-old boy, Blake, grow up. We are preparing for her transplant at a medical center about six hours away from where she lives. According to a Milliman Research Report on U.S. organ transplants, the average first year cost for a lung transplant is $785,000 and there are many costs not covered by insurance as well as lifelong transplant-related expenses.”

Once Allie was settled at UPMC, Valerie blogged regularly on the COTA for Allie D website to keep friends and family members back at home in Spencerport updated on every step of the journey.

January 24, 2018:       In the ICU at Pittsburgh. For the most part, she was stable on the ambulance ride here. The transfer to the room was a little rough. The trip here overall has set her back.
 

January 25, 2018:       ECMO is helping some. All previous sedation and pain med IV drips were stopped today and she is now on a very different regimen for pain/sedation. She has not woken up yet. Keep the prayers going.
 

January 27, 2018:       Allie is about the same, stable but the reality that she really needs a life-saving transplant really hit home with us today. ECMO continues to be the bridge buying us time. Thank you to all of our friends and family who are caring for Blake, watching Allie’s beloved cat and helping with online donations to COTA for Allie D. The COTA funds help with lodging, food, gas and so much more.
 

January 29, 2018:       Allie is waking up slowly. She has a tracheostomy so she is not able to talk. From what I understand an overwhelming pseudomonas lung infection is what brought her down. It was a cold, broken ribs from coughing, not able to do airway clearance … the pseudomonas went wildly out of control. Today was a class for people starting evaluation for transplant. I wonder if there will be lungs for Allie in time. The ups and downs of having the person we love in an ICU is painfully difficult but every minute she is hanging on is a good minute for us. I am full of worry and full of hope at the same time. Continue your prayers, continue the fundraising for COTA and know how deeply we appreciate you all.
 

February 1, 2018:       Listed!!!!!!!!! Allie is official, she is listed for lungs. She can get the call at any time. Keep saying prayers, sending positive energy and spreading the word about COTA.
 

February 3, 2018:       The wait is brutal every minute that I sit and watch her life support machines. They weaned down her ECMO some but she did not tolerate that so settings are back to where they were prior. Her white count is back up again, which is very worrisome. I just keep praying she will get to transplant.
 

February 20, 2018:     It is a go! Donor lungs look good and they are being flown here as I write this. Please say prayers for this to be the start of a healthy long life for Allie. Pray for the surgeons, the medical team caring for her and for her donor and family. This will be a 12-24 hour surgery. 
 

Allie received her new lungs … and her second chance at life … on February 20, 2018. She remained in Pittsburgh with Valerie and Scott until late May and then made the long trek home to Spencerport so excited to hold her little boy. 
 

June 18, 2018:            Allie and Scott are back home, reunited with their little boy. She is doing well and is getting settled in their apartment. Blake is a busy little 16-month-old, such a happy little guy. I am thankful that only four months after transplant she is back home with him. Her kidneys are stressed from the various medications she needs to take daily but hopefully this is just another hurdle she will get past. We go back to Pittsburgh this week for chest x-ray, blood work, PFTs, a clinic appointment, a bronchoscopy and biopsy to check for infection and rejection. This is one of many routine surveillance procedure trips we will be making. 

Allie’s transplant recovery, and journey, continues. She is extremely thankful for the new life that has been given to her. She is also very grateful to be back at home with Scott and Blake. There are not adequate words to express how she feels about the selfless decision her donor’s family made. As she reflected on the past 18 months, Allie shared this message: 
 

“When my mom realized that my health was very rapidly going downhill she contacted COTA with an extreme sense of urgency because transplant was my only option. She was overwhelmed and did not know where to start. COTA helped direct her with very specific things she could do. The COTA staff was amazing. They were very helpful with getting a website up so fundraising could begin immediately. COTA provided a way for people to make tax deductible contributions. COTA provided fundraising advice and guidelines that were IRS compliant. While my mom and fiancé were in Pittsburgh being my support team, COTA worked behind the scenes to help champion the efforts of our amazing volunteers back home in Spencerport. The COTA staff was always very understanding, provided kind words of support for my family, and were readily available for any questions and guidance. My family was able to confidently place their trust in COTA.”
 

Allie continued, “The COTA fundraising website provided a central place to communicate with and update our friends and family on my condition and provided a place where they could send their much-needed words of support. Recovery was not without difficulties and sometimes I felt discouraged. Seeing how many people came together to raise money, and reading their positive and loving messages really helped me to keep pushing myself after my double lung transplant.” 
 

“While I have been battling Cystic Fibrosis for more than 30 years, my need for a double lung transplant came very quickly. In order to be eligible for new lungs, we had to show we could afford the significant associated costs not covered by insurance. We had to move fast to start raising funds, and the Children’s Organ Transplant Association (COTA) made that happen. My friends and family members who felt helpless while I struggled in the hospital found COTA to be their lifeline to me. COTA has provided immeasurable peace of mind for me, my family and my community — and will continue to do so … for a lifetime,” Allie said.
 

In February, Allie and Scott celebrated their son, Blake’s birthday with friends and family. Allie said it was a huge blessing. Allie says COTA continues to be by her side. Travelling back and forth to Pittsburgh for post-transplant care is not a financial stressor because of the COTA funds that have been raised in her honor. COTA is a huge help with monthly prescription medications and medical appointments. She also says each new year is a challenge with insurance companies and co pays. According to Allie, “Having COTA provides a safety net for my family and that is very reassuring … especially during these challenging times in our world.”
 

Recently Allie, Scott and Blake have become a family of four with the addition of a new German Shepard puppy named Arla. Allie reports that Arla is providing a lot of love and entertainment while the family is trying to stay safely at home to avoid any unnecessary exposure to germs.

Happy Mother’s Day to an Amazing COTA Mom from your COTA Family!

About the Author

New York Trend is a weekly news publication that focuses on issues and lifestyles of the African & Caribbean American communities throughout the New York metropolitan area and Nassau and Suffolk Counties of Long Island. It is a respected and well recognized news publication that has been in existence since 1989. Owner, Publisher and Executive Director, Dr. Teresa Taylor Williams has been at the helm of this award-winning publication since its inception. New York Trend continues to be the only black woman-owned, metropolitan newspaper in New York and Long island. New York Trend is the largest black-owned newspaper throughout Nassau and Suffolk counties.

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