Mom is Winning Her Battle with Cystic Fibrosis
May is National Cystic Fibrosis (CF) Awareness Month. More than 30,000 adults and kids in the United States have CF. In West Virginia, a CF survivor is currently winning her 37-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 daughter.
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.
For Kristen Jagodowski of Falling Waters, West Virginia, these statistics and challenges have been her reality since was diagnosed the day she was born in May 1984. Kristen always knew that one day her CF would progress to a level that would require her to undergo a life-saving double lung transplant, but she never let that knowledge stop her from living life to the fullest and pursuing her dreams. Now post transplant and enjoying every second with her greatest gift, her daughter, Kristen recently reflected on her transplant journey to date and her beloved role as ‘Mother to Taylor.’
Here's her story:
Ralph Waldo Emerson wrote, “Life is a journey, not a destination.” There is not a quote that better explains my transplant journey. The beginning is clear … the road is long … but the end always remains unknown.
I was born with a genetic disease called Cystic Fibrosis. My parents never knew anyone with CF so it came as quite a surprise. I had a healthy older brother. When I was rushed to a different hospital after birth, my family was shocked and fearful of what the future held. Fast forward to today. I will soon be celebrating my 37th birthday. At the time of my diagnosis as an infant, the doctors told my parents not to expect me to live past high school. I can proudly say I proved them wrong, and I now know my journey started then and there.
Growing up I was relatively healthy. I took medicine daily, but never experienced any serious illness. I visited a special clinic annually. I was a normal kid. I enjoyed sports, which likely attributed to my good health. I had a great upbringing.
During my freshman year of college I experienced my first ‘CF exacerbation.’ At the time, I did not really know that was the case. I was diagnosed with pneumonia. Years later I started to see a slight decline in my health. In February 2008, I married my best friend and we went on our honeymoon. On the way home I got very sick. We returned home and my condition gradually worsened. I finally scheduled a doctor’s appointment at the University of Virginia, and I was immediately admitted to the hospital. I was devastated. Although I always knew my health could deteriorate, for some reason at age 23 you feel invincible. I was newly married and starting a new life. Hospitalizations were simply not part of that picture.
Sadly, my health never returned to what it was before. The next several years were non-stop hospitalizations, IV therapies, doctors’ appointments, procedures, labs and tests. Although I remained upbeat and tried to live a ‘normal’ life, I could feel things slipping away. When it came to starting a family, the road was difficult. We tried naturally for one year and finally decided to see a specialist who told us it was not possible for me to have a healthy pregnancy. My world came crashing down. My health was worsening and my dream of becoming a mother was shattered. My dreams were being taken away.
God has always put amazing people in my life. One of those is my childhood best friend, Jennifer. We were both seven years old when her family moved in down the street from us. I had no idea then just how dear of a friend she would be. Fast forward to December 2009 after receiving the devastating news about not being able to have children. I was on the phone with Jennifer updating her about our progress with adoption. Jennifer asked me if she could be our gestational carrier. Wow. In May 2010 we implanted our embryo and Jennifer was pregnant with our miracle baby.
February 2011, on our third wedding anniversary, Taylor Mae was born. My dream came! I was finally a mother. As many mothers know, pregnancy takes a toll on your body, which I did not experience. But motherhood also takes a toll. In 2012, I began the preliminary tests for my first transplant evaluation. It was concluded I was too healthy to be listed for new lungs, but it was something we should start thinking about. In 2013, we decided to move my care to the Johns Hopkins Adult CF Clinic. I was followed carefully there; the reality of transplant started to take hold.
My health continued to decline. I soaked up every moment I had at home with my beautiful baby girl. After a very rough year in 2015, my medical team decided it was time to begin serious discussions about transplant. I was in and out of the hospital, spending months on IVs, and my lung function was down in the 20s. In 2016, I started pulmonary rehabilitation to get myself in the best shape I could, and in July I was officially listed for a bi-lateral lung transplant. There is immense anxiety and fear that comes with being listed for a transplant. There was so much I wanted to do first. The week before being listed we moved into a new home. And just three weeks later, Taylor would be starting kindergarten. There was simply so much to do.
Yet again, life was out of my control. Three weeks after being listed I was called for a new set of lungs. It was the night before Taylor’s first day of kindergarten. I had just put her to bed. After a missed call and a text, we threw together what we could and headed to Johns Hopkins in Baltimore. That night I received a beautiful set of healthy lungs. My seven-hour surgery was a success. My medical team was amazing. They were able to send me home just eight days after my life-saving transplant, and for the first time in my life … I took long, deep breaths. Never had I known my normal was not normal.
I wish I could say everything from then on was easy. I traded one health issue for another. I continue to be on a lot of medications, endure lots of tests and lab work. Doctors’ appointments continued and even some hospitalizations. Sadly my marriage ended and life was not as perfect as I thought it would be post transplant. But I am alive. I am breathing and loving every minute. I am able to work and provide a good life for my daughter. I am able to enjoy sunny rays on a summer day and relish the taste of a hot cup of coffee first thing in the morning. My life and transplant journey are intertwined and I cannot wait to see what comes next on this journey.
Kristen attributes a big part of her successful transplant journey to date to the Children’s Organ Transplant Association (COTA). “COTA completely understands that a transplant, of any kind, is a journey,” Kristen said. “Many people understand the difficulties associated with getting a transplant and the long road to recovery, but very few understand it does not end there. COTA is with a transplant family every step along the way … it is what makes this amazing organization so vital to anyone on a transplant journey.”
Kristen learned about COTA when she had her official transplant evaluation at Johns Hopkins. A transplant social worker talked to her about the myriad of transplant-related expenses associated with a double lung transplant and suggested Kristen reach out to COTA to see how they might be able to help. Kristen remembers the social worker telling her a transplant carries with it an emotional, physical and monetary burden; therefore, she was eager to learn more about COTA. Kristen had an uplifting and hope-filled call with a COTA staff member. She completed and submitted the necessary paperwork and in late May 2016 the Jagodowski family officially became part of the COTA Family.
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.
On July 26, 2016, a COTA fundraising specialist trained the family’s large group of volunteers at the family’s beloved home church. The COTA staff member talked to the team of volunteers about COTA’s fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website they would be given for fundraising and promoting the family’s story. This group of family and friends quickly got to work organizing fundraisers for COTA in honor of Kristen J to help with mounting transplant-related expenses. Working nonstop they planned and implemented creative COTA fundraisers that generated more than $40,000 for transplant-related expenses.
“Once we met with COTA a huge weight was lifted,” Kristen said. “COTA provided great advice on how to raise money, continually tracked the team’s progress and offered ongoing encouragement, shared helpful campaign materials and tech support … all of the things that were necessary for the volunteers to gain the support and confidence of our community. COTA was simply amazing in helping the volunteers know exactly what to do and to get going raising funds for transplant-related expenses.”
Every day Kristen is excited to wake up and see what blessings the day will bring. She loves life and is living it to its fullest each and every day. When she thinks about her favorite things, the top of her list is her daughter, Taylor. She also loves spending time with her friends and family, watching the television show, “Friends” and drinking Mountain Dew and coffee.
“My hope for the future is to live a long and healthy life with my daughter at my side enjoying all of my favorite things. I am now almost five years post transplant and COTA is still on this journey with me. Doctors’ appointments, medications, procedures, travel expenses are all part of my life and all of those come with a cost. The transplant-related bills do not stop. I am so thankful COTA’s support and guidance continues to be a vital part of my journey, relieving the financial stress still today. What a blessing it is to know COTA will continue to help me breathe easier and give me HOPE … for a lifetime.”
She continued, “COTA has been such a blessing for me in many ways and I am so very thankful for all they do. Even with the uncertainty in our world, it is good to know our family can count on COTA through it all.”