Brother's CF Diagnosis/New CF Center
When I was 7 years old, my brother, at the age of 9, would be diagnosed with Cystic Fibrosis as well. Like me, he had been to many doctors over the years. He had constant nasal congestion and digestive issues. He was treated for allergies and was diagnosed as having an allergic cough. The doctor claimed it was due to my father’s smoking. One doctor said his adenoids needed to be removed. So, at the age of 4, they were removed. There was no improvement in his condition. A month or so after my positive sweat test, all my siblings were tested for CF. My brother’s test fell into a gray area. My parents were told that although my brother’s case looked, acted, and presented like CF, the results were not positive, and therefore my doctor could not give a diagnosis of CF. However, the doctor would treat him as if he had CF.
This would lead my parents to seek out yet another doctor, this time in NY. This doctor would tell my parents that she had several patients that fell into the gray area but she knew they had CF. Some mutations were more prone to falling into an intermediate category. Our care would be transferred to NY. This is where CPT would evolve into 8 positions using pillows to prop up my body for optimal postural drainage. At the end of each position, instead of using a percussor, we would exhale as my mother would push down and shake her hands, vibrating the targeted area to further loosen the mucus. She would do this several times, each time lasting as long as my exhale. Next, I would do 5 rounds of coughing and spitting after each position. My brother also needed CPT now, so my father usually did his CPT while my mother did mine. On occasions we would switch it up. In the summers, if my brother swam a lot in our pool, and coughed up mucus, he only had to do one round of CPT. I was always jealous and wished the same rules applied to me.
The first time I was hospitalized under my new care in June of 1992 at the age of 10, I was very angry. I felt blindsided. I was just going in for a normal check-up and I was told I needed a “tune-up”. I remember getting into my room and being so mad. I would come to enjoy my stays here though. I loved sitting in the windowsill and counting the taxis that went by. I had a view of the NY streets below me and I'd count the water towers too. I became fond of the view. The physical therapists here were the best I ever would come across. Between the IV treatments and the CPT, I would always feel better within days. I’d feel so much better in fact, it was hard to cough anything up during CPT. The therapists would not let you get away with that though. I would have to try to accumulate some saliva in my mouth so I had something to spit up. They would also show me how to program my IV so that I could do my own saline flushes. They showed me how to turn on my tv so that I would not have to pay for it. The food was amazing as well. I would order chicken and steak for almost every lunch and dinner. I was allowed to order a night snack too, and I would always get 2 puddings and 2 cranberry juices. Needless to say, besides my lungs getting a tune-up, I also gained some much-needed weight. There was an exercise room where I would do some walking on a treadmill. There was a room that had a pool table and a Donkey Kong arcade game and I spent most of my time here. I played a lot of pool with the other kids in the hospital. On at least two occasions, my brother and I were hospitalized together and shared a room.
He usually ended up going into the hospital after I had just left, so it was rare to be together. We spent a good majority of our time in the game room. When I had to spend holidays like Christmas or Easter in the hospital, they would give me a pass to go home for a few hours to be with my family. In later years, I would only be allowed one week in the hospital as that is all my insurance would pay for. Eventually this would turn into two weeks at home without any of the conveniences I had gotten used to. One good thing about home IVs was that I didn't have to use an IV pole. My medicines came in little balls or small plastic containers that housed a small balloon filled with medicine. As my disease progressed, later in life, I would have benefited greatly from having someone to do my therapy for me 3 times a day, providing me with 3 meals, and doing my IVs for me.
(Last picture from a few years later)
No comments:
Post a Comment