StudentAbout kkrb21499
posted 1 hour ago (modified 0 minutes ago)
I am a 34-year-old very sick Mom. I was diagnosed in 2006 with Interstitial Lung Disease and Pulmonary Fibrosis, after an open lung biopsy showed fibroid tissue in my lungs and some lymph nodes in my chest. After two years and a ending up on hospice and briefly, the Lord fit for me to begin to improve. For the next couple of years it seemed to be stable except for a few bronchial infections that did not clear and a couple of bouts with pneumonia - something that had always landed me in the hospital a couple time a year.
Let me back up 34 years. I was born in Garland, TX in 1976 with sever club feet. The doctors said that I would never walk, but because my Mother is and Grandmother was determined and stong, steadfast, and hardheaded; failure was not an option. Not for me, and not for my doctors. My mother was an athlete and played basketball up until her sixth month of pregnancy in a traveling league. (She retired from teaching after breaking her arm when I was in the 4th grade in the gym and 11 surgeries later they told her she couldn't Coach - she was done) The sports doc for her injuries, and later Dallas Cowboy's Doctor, Vandemeer and Snoots began working to manipulate the correction of the feet . Then came the pneumonia. I am sure you can guess that it was associated with anesthetic. A common problem with putting anyone to sleep is a risk for pneumonia and I was a baby having procedures to correct a major malformation from birth until I was 24. I have had bone graphs from both hips and partial fusions at this point.
Back to 34- May 2010
My doctor comes in the room a little more worried that normal. Of course I am a basket case because I know something isn't right. I have been sick now since childhood. I have chronic intestinal issues. I can't go to the restroom! I have pneumonia left and right and this time, it won't respond to antibiotics. They have told me that I have three gram negative bacteria in my sputum and they want to do some test called a ....
SWEAT CHLORIDE? WHAT? and a GENETIC TEST? But I am 34 and I have three children and I have all of these other things! and but and but......................
I am sure you have guessed by now that I have Cystic Fibrosis. Atypical in that I have one mutation in stead of Classic, with Intestinal and Pulmonary Manifestations. I have pseudomonas that we are having a majorly hard time clearing. I have medical expensing that are eating my family alive. I have no idea what kind of resources are out there because I have never had to apply for anything. We are very blessed to have a CF Care Center within 60 miles, but traveling there ill, is still a production. With gas money, and utility bills, not to mention our children the mortgage we are not able to make it. I just need to know where to start. I am a student at LeTourneau University, a PTO Officer, the Band Booster VP, and all of the sudden I can't even pay my cell phone bill to talk to my doctors. I am scared and helpless.
