COTA for Ashley Pearce
Below is Ashley's Story. To follow Ashley's journey, sign up for an account to the left, where we will continue to post updates on Ashley's condition.
With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. In Eureka, volunteers are raising funds for transplant patients like local woman, Ashley Pearce.
Ashley is the daughter of Lisa and Linus Lorenzen. Born on June 24, 1987, Ashley was diagnosed with cystic fibrosis. The doctors at Stanford University Medical Center in Stanford, California, have recommended a life-saving double lung transplant. An estimated $100,000 is being raised by Eureka volunteers.
My name is Ashley. I am 26-years-old. I was diagnosed with Cystic Fibrosis at the age of 5 ½ in 1992. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. There is no cure.
I suppose that my story starts at birth like anyone else’s. I was born on June 24th 1987 two weeks late and a good sized baby weighing in at 8 pounds 13 ounces. At 10 days old I caught my first cold and was put on my first antibiotic. By the age of 6 months I had had pneumonia twice, and this cycle of colds and antibiotics continued. That led to testing for Cystic Fibrosis the first time. I was misdiagnosed by a false negative sweat chloride test. I continuously caught colds over and over. When I was about 16 months old, I ended up in the hospital with streptococcus pneumonia in my blood, and was one very sick little girl. When I was about 4 and a half years old I got the chicken pox; however, I was one of the 2% of children that got chicken pox pneumonia. I never fully recovered from that illness. I coughed continuously from that point on. I would have to sleep sitting up in the recliner until my dad built a wedge that we could place underneath my mattress to elevate my head so that I could sleep a little at night. They actually had to prop up my cradle with pillows too as an infant when I was sick so that I could breathe.
When I was 5 I was diagnosed with allergies and I was put on allergy shots that were doing nothing to help. My mom decided to take me to an allergy specialist in Sacramento. She came with my several medical charts in hand and within 5 minutes of being in the office he said that he wanted to test for Cystic Fibrosis. My mom handed him the paper and said that I had already been tested 5 years earlier and that it was negative, but he wanted to re-test. As you can imagine my mom and grandparents were very fearful because when they had researched Cystic Fibrosis (CF) when I was 6 months old the average life expectancy was only 7-9 years old, and I was already 5 and a half. My test down in Sacramento came back positive and my life changed dramatically.
I had my first sinus surgery a few months after diagnosis to clean things out. I think that my current total of sinus surgeries is at 23. My very first sputum culture showed some pretty resistant bacteria, and I started on IV antibiotics right away. I got my first surgically placed central line called a Broviac when I was 7 years old after IV’s in my arms became almost impossible. I was getting the IVs changed every day and my veins and little arms were suffering because of it. The first surgery for my Broviac was done in Eureka and the doctor who put it in forgot to add a clamp to the IV, so it was back to Sacramento for another surgery to correct it. I had the Broviac for about a year until it got infected and needed to be taken out. I then switched to a Port-a-cath that is accessed just when I need it. I am now on my fourth one. I have been very lucky to have each Port-a-cath last anywhere from 5-7 years. I am on IV’s about half of the year, sometimes more. My new schedule of IVs is 24 hours a day. I do 10 breathing treatments four times a day with different medications including Xopenex, Hypertonic Saline, Pulmozyme and an inhaled antibiotic. I have both an IPV machine and a Vest that I do anywhere from 2-4 times a day for a half hour each time to help loosen the mucus in my lungs. I have inhalers that I do twice a day and take about 20 pills throughout the day.
My Cystic Fibrosis has been even more complicated by completely unrelated diseases and genetic disorders. I have a hereditary blood clotting disorder called Von Willibrands disorder which makes surgery slightly more dangerous and difficult. I require medical treatment before and after surgeries to make sure bleeding is stopped. In October of 2009 at 22 years old, I was diagnosed with a Chiari Malformation after complaining my entire life of severe neck and head pain and required brain surgery. Because of the Chiari malformation when I would cough too hard I was pass out to the floor. I totaled my vehicle is April of 2008 because of a loss of vision episode. Thankfully since surgery that has stopped!
Going to school was always a challenge, one that I took head-on but not without difficulty. I typically missed about 50% of school, and starting 5th grade sometimes required going out on home and hospital for a period of time. I can proudly say that I always maintained a grade point average of at least 3.75. I dreamed of going to college and knew that I could do it. Unfortunately CF had other plans. I have only been able to attend 2 semesters, but with a 4.0 GPA.
I started cheerleading after my dad’s dreams for a little softball star were dashed. My softball career consisted of only being healthy enough to play in two games, hitting the ball once and forgetting to run! The next year I was old enough to be a cheerleader for our local youth football association. It was there that I found my calling, although football season was rough because of the time of year and cold weather I enjoyed it. I lived for the competition at the end of the season. I cheered my 8th grade year in Jr. High School for basketball which was great being indoors. I followed season with another season of youth football. That season would forever change my life. My instructors that season happened to be part of our local competitive all star team, Humboldt All Stars. One was even the coach’s daughter. I was recruited for the team at the end of the season and continued for 7 years. I was on team, taught tumbling classes, and coached some of the other teams including my younger sister’s. Cheerleading saved my life in so many ways. Not only did I make up for my lack of socialization at school, but I made some of the best lifelong friends someone could ask for. The exercise cheerleading provided was outstanding for my lungs, muscle tone, weight, and bone mass. A scan to determine bone mass showed that I was above average for healthy people my age which was a remarkable feat since people with CF are prone to osteoporosis and osteopenia. Unfortunately where my lung function and health is today I can no longer cheer, and committing to coaching is also difficult because I cannot be there 100%.
I would not be where I am today without the support of my amazing family and friends. I am the oldest of 8 children, 7 still living. 2 years ago on March 23rd 2010 I lost my 18-year-old brother, just 4 ½ short months after the loss of my 19-year-old cousin. The loss of those boys has been tougher than anything that CF has ever thrown at me. Together with my family, friends, and amazing fiancé we are slowly readjusting to our “new life” without our boys. As I move ahead to this new phase of life a waiting game of lung transplant, I know that I still have the continued support of everyone around me. I could not be more thankful for everyone from the people that I have known my whole life to the anonymous strangers helping from a distance. I look forward to my future as I always have with a faith that will never stray.