Laura's Story (final)

Laura is a 21 year old college student. She tries her best to fit in, and really just wants to be like her peers. This is very difficult for her, because she is living with cystic fibrosis. Cystic fibrosis is a chronic disease that mainly affects one's lungs. Laura was first diagnosed with CF when she was three days old. At that time, in 1981, the life expectancy of someone living with CF was lower than it is now, which is only around 30 years old. I think it would very difficult to grow up not knowing if you were going to live to have another birthday or not. Laura spent a lot of time in the hospital. Enough time to be on a first name basis with almost everyone, and she describes how she's seen medical students become interns become attendants. She spent a lot of time growing up inside the hospitals walls due to her "tune ups" that she had to get regularly as a child. She could never forget her own mortality because she grew up watching her friends with CF all die off. Laura's childhood was anything but easy living with her condition.



some information on CF-
Cystic fibrosis (CF), also called mucoviscidosis, is a hereditary disease that affects the entire body, causing progressive disability and early death. Formerly known as cystic fibrosis of the pancreas, this entity has increasingly been labeled simply 'cystic fibrosis.'[1]
Difficulty breathing and insufficient enzyme production in the pancreas are the most common symptoms. Thick mucous production as well as a low immune system results in frequent lung infections, which are treated, though not always cured, by oral and intravenous antibiotics and other medications. A multitude of other symptoms, including sinus infections, poor growth, diarrhea, and potential infertility (mostly in males, due to the condition Congenital bilateral absence of the vas Deferens) result from the effects of CF on other parts of the body. Often, symptoms of CF appear in infancy and childhood; these include meconium ileus, failure to thrive, and recurrent lung infections.
Cystic fibrosis is one of the most common life-shortening, childhood-onset inherited diseases. In the United States, 1 in 3900 children are born with CF.[2] It is most common among Europeans and Ashkenazi Jews; one in twenty-two people of European descent carry one gene for CF, making it the most common genetic disease among them.
Individuals with cystic fibrosis can be diagnosed prior to birth by genetic testing (See also Dor Yeshorim) or in early childhood by a sweat test. Newborn screening tests are increasingly common and effective. There is no cure for CF, and most individuals with cystic fibrosis die young — many in their 20s and 30s from lung failure although with many new treatments being introduced the life expectancy of a person with CF is increasing. Ultimately, lung transplantation is often necessary as CF worsens.
CF is caused by a mutation in a gene called the cystic fibrosis transmembrane conductance regulator (CFTR). The product of this gene helps create sweat, digestive juices, and mucus. Although most people without CF have two working copies of the CFTR gene, only one is needed to prevent cystic fibrosis. CF develops when neither gene works normally. Therefore, CF is considered an autosomal recessive disease. The name cystic fibrosis refers to the characteristic 'fibrosis' (tissue scarring) and cyst formation within the pancreas, first recognized in the 1930s


Recently Laura has been trying to stay optomistic. She has many friends from her college, but she feels like they don't fully understand her disease. She gets very sad sometimes still, especially when she has to stay inside on Friday nights because of her disease. She has a loving relationship with her dad. Her dad often cries in the audio tapes and says it would be his dream for her to outlive him. Laura received a lung transplant in 2001. This is what she has to say about it.

"This is Laura. And I'm sitting here with my cat Gus who is asleep. I haven't talked in a while. On Monday it will be a year since my lung transplant. So, I'm happy I made it a year, but it is not the year that I'd dreamed of: complication, after complication, after surgery, after surgery, and rejection and lymphoma. I've had to get a feeding tube up back in because I lost so much weight. You know I think to get to the transplant, I really had to pretend that the transplant would do more than it realistically could do for me. My whole life, I've been searching for something to fix me. And it hasn't. "

Laura has a book published, titled "Breathing For A Living"
You can pick it up at Barnes & Noble.