I was diagnosed with Cystic Fibrosis, when I was 9 months old. I had a constant cough, and wheeze. I would stay up late at night, and my parents got worried. I also had bowel problems, which characteristics relating to symptoms of cystic fibrosis. My parent's took me in for a sweat test, and I was diagnosed with Cystic Fibrosis.
I never had a big problem with my CF. I had occasional coughs, and was sick more often then most children. I took antibiotics, and did some nebulizer treatments, and would get back to normal. I was very active. I enjoyed playing outside, with the other children. I went to pre-school, and had lots of friends. I was always out and about. My CF didn't stop me from being a normal child and having fun. I only did my nebulizers when needed, as opposed to my every 4 hours, I do today. I never had any hospital visits my entire childhood as well. Then, when I was about 6-7 years old, I was diagnosed with asthma. The doctors felt my CF was being triggered by another problem, and was later figured to be *asthma. Let's just say the two don't get along very well.
My asthma and CF were controlled. I was on albuterol, when I needed it, and flovent, a steroid to help keep my lungs open. I didn't understand my disease until years later. My first hospital visit was in I believe 1997. I had never not been able to fully breathe, but I suddenly couldn't breathe even when I stood up, so my mother told me I would have to see my asthma dr. I had been seeing him for a few years, just for some check ups, and to get listened to. He told me for the first time, I would need to be on IV antibiotics at Bridgeport Hospital, and would get a *"piccline" so I could get med�s at home after a few days. I didn't know what any of this meant. I went in and got the picc. I was terrified. The dr. was so nice and kind, and they put me under for the picc. My mom stayed with me in the hospital, and I got ceftaz, and tobi through the picc for a few days, and went home on the picc. I was better in about 3 weeks.
The second time was worse. It was when I was 14 years old. My dad was engaged to a medically educated women. She helped me, and I started going to a CF dr. They figured the CF Dr. could focus on my asthma and CF, as opposed to an asthma DR not focusing on my CF. I had the same problem, after going about 2 years without a "tune-up" which to a CF patient is a definite no-no. So, my symptoms were worse. Tightness, infection, etc. I was in the hospital with the picc again. This time I stayed in for..28 days! I really thought I would go completely insane, if I stayed another moment of my life in that hospital. I got better, and was sent home for another week or two of treatment, and let me tell you. The picc removal was not as pleasant. The nurse had no clue what she was doing, and tugged slowly to get my picc out in my home. She later freaked us out, claiming it was "stuck". After 2 horrible hours of pulling and no luck, I went to the ER, the surgeon gave one tug, and I was out.
My CF has gotten worse over the past few years. The Dr�s. say I am in a lot better shape than I could be. My CF isn't as bad, as my asthma probably is. I do *treatments every 4 hours. I am on pulmozyme, albuterol, atrovent, advair, tobi-28 days on and off inhaled, and pulmocourt. I do *chest pt with my vest, usually 2 times a day, 15-20 minutes each. I just got the latest version, and my its wonderful to transport compared to the old one. I usually go on antibiotics such as cypro, biaxin, zithromax, and my savior drug, steriods. Prednisilone, or orapred. But I am immune to most of the antibiotics now, and often they don't work, or just solve my infection temporarily. I am not affected by any of the other problems associated with CF, like diabetes, osteoporosis, etc. I have bad sinus problems, and polyps. I get runny noses and sinus infections a lot, but beside that, I consider myself lucky to be as healthy as I am, and don�t plan on letting my CF stand in my way.
My last hospital visit was in August 2004. It was a 4 week course of antibiotics at home, because I had once again waited 1 year for a tune up, and It was needed. I was better and relieved to be breathing again. I went to NH after that for a vacation, and went in the lake water, and it was a tad bit cold out. I think I caught a bug from there, or the water, and have pretty much sick since then. On and off coughs, infections, and no response to antibiotics. I'm going to visit my CF Dr., and I'm sure it's time for a tune up again. I am used to it by now, and once the picc's in, I am fine. I decided to come up with this page to inform others of CF, and keep myself busy while I am sick. This is as much information as I can remember, but maybe that's good that my CF history hasn't been as thorough as others.
*Cystic Fibrosis- A genetic disease, that is inherited because each parent has a defective gene. It affects the lungs, and the pancreas. It make's a lot of muscus build-up, in the body, making it hard to breathe and digest.
**Picc Line- A long tube that is like an IV, but can be kept in the body for longer periods of time, and allows the patient to recieve medicine at home. It is inserted in the arm, and heads up to the largest vein in the heart.
*Asthma- A disease that affects the lungs. Anyone can get it, and is not genetic. It can be mild or severe. It causes cough, wheeze, and shortness of breathe.
*Chest PT- The use of a machine to pound or percussion the chest, and loosens the muscus in the body, making it easier to cough up, and breathe.
*Nebulizer- A machine, that you pour medicine into. It forms it into steam, and is breathed in through the patients lungs. "Treatments" the process is called.
