BetterBattle.org
The battle for a better life with cystic fibrosis and a future without
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Miss Brandie K
Fun facts:
Loves: God, my family, friends, pets, blanket, the color pink, and… HotDogOnAStick…w/cheese!
Enjoys: dancing, country music, reading Harry Potter, going to the ocean, and celebrating her birthday!
Overall I'm a fairly happy gal but I do have to deal with everyday life and for me that is living with Cystic Fibrosis (CF) My parents learned that I had been born with the genetic disease when I was just 2.5 years old. For this reason I have never known anything else except living a lifestyle to care for my health and all of its challenges. Born on June 13, 1984 in Salt Lake City, Utah, I began to present the classic symptoms of CF throughout my childhood, so failure to thrive and a persistent cough lead to the sweat test that determined I did have cystic fibrosis. Shortly after my diagnosis my father joined the US Air Force, giving me medical coverage and the chance to travel. We spent four years in England and since CF is quite common among Europeans I was fortunate enough to never feel unusual or strange because of my illness. After returning to the US we spent the following 12years in Washington State where I received the most phenomenal care at Madigan Army Medical Center. My daily required care and treatments included medications for digestive problems, therapy to clear mucus along with occasional IV antibiotic therapy to combat the lung infections. Additionally I underwent surgery every few years to remove sinus polypus. By the age of 12 I was diagnosed with Cirrhosis of the Liver, a somewhat unusual consequence of CF. I was immediately referred to the University of California, San Francisco for transplant evaluation and ultra-sounds and biopsies every 3 months were added to my care routine. Finally on November 6th, 2000 I was the recipient of a living related transplant. My father was able to be my donor, giving 40% of his liver (the left lobe) to replace my diseased and failing one. The recovery process was somewhat more difficult than typical with liver transplants considering I still had complications due to CF to deal with. Five months following the transplant my immune-suppressed body contracted a life-threatening fungus to the lungs known as Aspergillious. Eighteen months of eight hours a day IV anti-fungal medications followed and eventually I was able to overcome the deadly infection. Now I must continue a daily oral anti-fungal medication as prevention. Since reaching adulthood, CF has continued to challenge me in many new ways. I personally consider CF to be a lifestyle because of the requirements it takes to stay healthy. On a daily basis I take up to 54 pills, 15 different medications and spend a minimum of 3 or more hours on airway clearance and breathing treatments, sometimes several times a day, all to supplement and correct the problems that CF causes.
Gaining and maintaining weight is difficult, so nutrition is extremely important. After struggling to maintain my weight for the last several years, I recently underwent surgery to have a G-tube (feeding tube) placed in my stomach. This allows me to receive additional calories by running a supplemental formula through a pump into the tube in my stomach, all while I sleep. Taking enzymes with food is still a must in order for digestion and now I also must treat myself as a diabetic, having developed CF related diabetes (CFRD). This requires monitoring blood sugar levels and giving insulin injections several times a day due to the fact that my pancreas is not able to work properly. To be quite honest my life at the moment is all about trying to keep it. While my liver is now functioning perfectly, I have still been fighting harder the last few years with the progression of the disease leading to lung infections which are now resistant to many of the drugs available. This resistance makes it much more difficult to stay healthy: meaning more frequent, longer IV therapies. To fight these more serious lung infections I’m usually in the hospital every 2 months or so and must continue IV anti-biotic therapy for up 4 weeks at a time. My lungs currently only function between 20-30% of their total capacity so most of the time I am now requiring the assistance of oxygen, a wheelchair and I have recently began the evaluation process to receive a double lung transplant. I am so lucky to have a wonderful care team through the University of California, Davis Medical Center who do everything they can to keep me as healthy as possible. I'm also extremely blessed to be part of a loving and supportive family which includes many friends from all places over the globe. My adorable pets are my pride and joy in life and bring me so much happiness as well as hours of entertainment and company. In this crazy life I couldn't live without those mentioned above as well as my blanket, which has been through it all with me, protecting me in all senses of the word. Sometimes a little security in something is priceless when you can't always be secure in life. Things may not be the most certain in my world at the moment (are they ever?) but that doesn't mean I'm not enjoying what there is to be enjoyed. Currently my time is spent mostly with my amazing parents: my best friends. At times I have attempted to take courses at the local community college but school has just become too much to handle and manage my health at this point. Due to the fact that I cannot maintain a job or school
work, I have been able to dedicate any free time I do have to spreading CF awareness. I am so proud to be a CF Foundation representative and give my voice of experience to as many fundraising events and educational opportunities that I can. For now I'm just trying to do the best I can, be a positive influence in the world, and love what I have while I have it. If I have learned anything at all it is that love is all that matters in the end.
work, I have been able to dedicate any free time I do have to spreading CF awareness. I am so proud to be a CF Foundation representative and give my voice of experience to as many fundraising events and educational opportunities that I can. For now I'm just trying to do the best I can, be a positive influence in the world, and love what I have while I have it. If I have learned anything at all it is that love is all that matters in the end.
