Diagnosis

Diagnosis

 

     I was born on a record-breaking cold night, on January 18, 1982. I was a healthy 7 pounds, 15 and ½ oz at birth. I had chubby cheeks and a full head of thick, dark brown hair. I was the third of what was to be 5 children. I was a very quiet baby and I drank my formula very well right from the beginning. I also slept a lot. At 9 months old, I was eating a variety of foods and had a healthy appetite. By 2 years old, I hardly ate anything at all, only fruit roll ups and chicken. By the summer, I had become a “very whiny and miserable child”, as my mother put it. Between the ages of 3 and 4, I only gained 1 pound. I had 3-4 bowel movements a day and hardly ate. My skin was very rough. For the first 4 years of my life, I had an unremitting cough, congestion, and frequent ear infections. At six weeks old, my mother took me to get x-rays, but nothing was found. The doctor just shrugged it off as allergies. So, for the next four years, my mother went from doctor to doctor in search of answers. In the meantime, my pediatrician often treated me with various antibiotics, adrenaline shots, antihistamines, and cough medicine. By March of 1986, at age 4, I had been running low grade fevers for 3 months. I was tired and cranky, and my lungs were always congested. My mother decided she needed to start from the top, so she called the Lung Association. They gave her a list of pulmonologists she could go to and she chose the doctor that was closest to where we lived. With my father unable to accompany her due to work, she came armed with her best friend by her side. Together, they took me to see the doctor in the hopes of finally getting some answers. He did a sweat test on me and it yielded a positive result for Cystic Fibrosis. He told my mother I needed to be admitted into the hospital immediately.

    I remember getting to my hospital room with my mother and her friend. At some point, two medical personnel entered the room and took me away into a small, nearby room.  They had me sit in a chair. One person held me down while the other prepared my wrist for an arterial blood gas. An ABG is more painful than the usual blood draw from a vein because arteries are much deeper than veins and they are surrounded by nerves. I cried and fought as much as I could, and when it was over, I was returned to my room. My mother and her friend hadn’t known the intentions of the medical personnel and were very upset to find out what had just transpired. This experience led me to be frightened to be alone with medical staff. A few days later, a technician came in to take my vitals but my father had left me alone while he took a quick smoke break. (He quit smoking a few months to a year after finding out about my diagnosis.)   I refused to let them take my vitals while my father was gone. They left and came back when he returned.

    I stayed in the hospital for about 10 days. Although it meant I needed IVs and blood draws, the experience was not all bad. I made a lot of friends with the other children in the hospital. We would play together and visit each other’s rooms. I had many visits from family too, and they came bearing gifts. I had whichever parent was able to stay with me at the time, all to myself. When I got home, I received more gifts from my extended family. I even got a Teddy Ruxpin from my grandmother's best friend!

                                             

                                                       

When I got home, life as I knew it dramatically changed. I was now going to need to add some new things into my daily routine to try to keep me healthy. I was prescribed Alupent, which I needed to nebulize twice a day to keep my airways open. On top of this, I needed to do chest physical therapy (CPT) twice a day, which required my mother to hit 5 different areas of my chest with cupped hands for several minutes at a time. After each position, she would then use a percussor to further vibrate the area and loosen the mucus. Then, I would cough as much as I could and spit out the mucus. At this time, I was told I only had to spit one time after each position. This process would be later modified when I changed doctors and moved my care to NY. My mother would do my CPT while we watched the Worst Witch, Mannequin, and Little Shop of Horrors ad nauseam. I don’t know how she put up with it. We would wake up at 6am on school days and go downstairs in the mornings to do therapy, so as not to wake up anyone else in my house. Besides that, I needed to take some extra medications every day. In addition to the multi vitamin I already took, I would need to take 2 Vi-Daylins. This was a multivitamin that also contained fluoride. Another vitamin, Vitamin E, was added as well. Before I ate food, I would need to take digestive enzymes so my body could better break down food and absorb it.

 

When I was diagnosed, my parents were told I would most likely not live past the age of 12. That was the current life expectancy of CF. Of course, they did not share that information with me at the time. By the time I was told about the life expectancy, it had jumped to 30 years old. I was of two minds about it. On one hand I knew these were the statistics, and that did frighten me. I didn’t really process the information until I was at death’s door. On the other hand, I knew deeply that it did not resonate with me. I had this inner knowing that I would live much longer than anyone had ever predicted for me. I always believed in mind over matter. I wasn’t sure how I would do it, but I knew deep down I would be ok.