“The Children’s Organ Transplant Association (COTA) alleviated a tremendous amount of stress for our family. We were in the middle of receiving a deluge of complicated medical information about Zoe and there were so many unknowns. At first we did not even think about the financial impact of a life-saving transplant. COTA gently helped us Read More

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Liver Transplant Recipient

Posted on September 6th, 2016

2016 SEPTEMBER Anna BattistaBloomington, Indiana September 6, 2016 September is going to be a banner month for the Battista and Thacker families of Colorado. On September 24th, a big 25th birthday celebration will be thrown for their beloved Anna Battista who is able to live life to the fullest now that she has received her new lungs, and her second chance at life.

When Anna was only four weeks old, she was diagnosed with cystic fibrosis (CF). Cystic fibrosis is an inherited disorder that affects the lungs and the gastrointestinal tract. A genetic defect causes the body to produce thick and sticky mucus, digestive juices, sweat and saliva that build up and interfere with the functions of the lungs and the pancreas. There is no cure for CF, but a double lung transplant enhances a CF patient’s life by greatly decreasing breathing difficulties related to the disease.

At first Anna’s CF diagnosis did not seem to be a big deal for her family. The little girl took enzymes with every meal and did daily nebulizer treatments. She was hospitalized only a few times for lung infections during those early years; she basically lived a normal life. By the time Anna turned nine years old her lung functions significantly decreased, and she continued to steadily decline until just before her 22nd birthday. At that point, the family was told Anna’s lung function had reached such a critically low state that her only chance to live much longer was a double lung transplant.

According to Anna’s mom, Karen, “We had no idea how to navigate this new territory. We were so overwhelmed with the details. As we started to investigate a transplant, we quickly discovered Anna’s best option was Duke University Hospital in North Carolina, but we lived in Colorado. How would we ever make this work?”

Anna and Karen traveled to North Carolina for the rigorous evaluation process. Part of that first week of testing and education was a meeting with a transplant financial coordinator at Duke who told Anna and Karen about the Children’s Organ Transplant Association (COTA). COTA uniquely understands that parents who have a child or young adult facing 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. Once trained, the COTA in honor of Anna B team of volunteers quickly started raising awareness about the ongoing transplant-related expenses using social media and directing contributors to Anna’s COTA campaign website.

“COTA gave our entire family hope when we learned Anna needed a double lung transplant. I had to stop working to take care of Anna during her transplant journey, and we had to relocate to another city for Anna to receive her new lungs. As soon as we learned COTA would help with transplant-related expenses, our financial concerns were alleviated and we could solely focus on Anna’s transplant,” said Karen. In September 2013, Anna and Karen temporarily moved to Durham, North Carolina, to start the waiting process.

Anna blogged on her COTA campaign website, Welcome to my Journey. I am about to trade in my dirty, sick, broken cystic fibrosis lungs for a pair of healthy, clean, gently-used lungs. The Journey has only just begun and yet it has already been quite the stomach churner. About a month ago (6 weeks to be exact) my mother and I left our home in Colorado to make the long trip across the country to North Carolina. I have been officially on the transplant list for a little more than a week and yet it feels like an eternity. Every day that goes by I struggle to breathe more and more, and I will the phone to ring with the news of lungs. Mom and I are trying to adjust to our new life here. For me the worst part of waiting is knowing what I am waiting for. Life is hard now but I know that immediately after surgery, it will be much harder. Hopefully I will have better news to type soon, but for now if you are coming along on this ride with me we are sitting at the bottom of a drop and the car seems to be stuck in this part. So we sit, stuck in the car unmoving, knowing at any second it will click on and go zooming up the hill. Bracing ourselves, leaning back yet looking forward. Waiting.”

Anna’s 22nd birthday was celebrated outpatient at Duke … waiting. But on October 12, 2013, the best birthday gift actually came a few days late when they received the call that new lungs were available for Anna. Anna and Karen remember being excited and nervous all at once. The transplant went very well, but there was a complication immediately post-transplant that caused Anna to be placed on a lung bypass machine, ECMO, for a few days. However, once she was removed from ECMO her gently-used lungs started doing their job. Amazingly, Anna was hospitalized post-transplant for only 19 days.

It took a few months before Anna felt the full effects of her new lungs. At about six months after her transplant, Anna was able to walk, hike and cross-country ski all without getting winded. Prior to her transplant, Anna could not walk more than 20 feet before she was out of breath.

Just when it all seemed to be going well with Anna and Karen back at home and settling into their lives in Colorado, Anna was diagnosed with PTLD, which is a form of lymphoma specific to those who have received transplants. As a result, Anna endured five-day rounds of chemotherapy every 16 days for a period of five months.

On October 23, 2014, Karen blogged, A year ago I was temporarily living in Durham, North Carolina, while my daughter got a life-saving double lung transplant. That journey was full of waiting: waiting for an answer on what to do about her damaged-by-Cystic-Fibrosis lungs, waiting to be on the waiting list for donor-lungs, waiting with mixed emotions for the ‘right’ person to die (loss for one family meant life for my daughter), waiting for her to heal after her surgery, waiting for rejection to go away, waiting for getting back to living a normal life. Now we are in a new waiting phase as she has battled lymphoma since June. Today, it’s waiting to find out if the chemo worked. Lots of limbo.”

The harsh chemotherapy treatment proved to be successful and on December 4, 2014, Anna heard the words every cancer patient wants to hear, “There are no cancer cells in your body.”

Today, Anna lives a very active life. She is finishing her psychology undergraduate degree with hopes of proceeding to pharmacy school or medical school. Anna will celebrate her 25th birthday by breathing deeply as she soaks in all life has to offer.

Happy 25th Birthday, Anna … Celebrate because it was worth the wait, and breathe, big!

For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email gro.a1568838561toc@m1568838561ik1568838561