Sunday, January 20, 2008

Diagnosis to Eight

My History - Chapter 2

After it was discovered that I had CF and was placed on digestive enzymes, my health greatly improved. My parents also began to search out all the information that they could about Cystic Fibrosis. They also studied our family history to see if there were any other relatives that had CF. While they did not find any other official diagnosis of CF, they found that my Grandpa Paul had a baby sister die as a toddler. She died of "failure to thrive", with very similar symptoms to CF. Being the 1930's and living in Idaho farm country, CF was not known. But with the revelation of my diagnosis, we are nearly sure that I am not the first Lyda baby to have CF. My mother also spent a good deal of time at our small town library trying to find all the information she could about CF. Being a small town, before the information age, most of the stuff that she came across was out dated and gave an even more grim prognosis for her baby. As I had yet to show lung involvement, the doctors held some hope that I may stay healthier for awhile, they also gave grave information to my mother. Average life expectancy was 18-21. Expect frequent hospitalizations, declining health... a life time of struggle.
But typical CF was not to be my fate. For the first ten years of my life, except for my skinny stature, there was little outside clue that I had CF. I was never hospitalized, my lung infections were infrequent and treatable with oral antibiotics. It was always difficult to keep weight on me, but my voracious appetite helped with that.

My parents also threw themselves into fundraising. It was shortly after my diagnosis that CF went from a disease that few knew about to one in the minds of the public consciousness with the release of the book and movie "Alex: The Life of a Child". While many CFers are uncomfortable with the portrayal of Alex in the book I thank Alex for saving my life. CF became a known disease and the money that poured into CFF got the ball rolling on life extending research. Below is an image from when my parents hosted a bowl-a-thon to raise money for CF when I was a toddler.

As I began to get older may parents began to understand that they had a smart, feisty little girl on their hands. While my sister was the easy, laid back child, I was stubborn, loud, uncooperative child. I also was a quick learner, who began reading when I was four. Also when I was for, we had my first semi-related CF event. In the Spring of 1987, I began to experience stomachaches. Because of the difficult digestive system of the CF patient, and being someone who had a lot of digestive issues, this was not out of the realm of expectation. I had a lung infection and was put on oral antibiotics at the time, but nobody though that the two things were related. After about a week of me complaining my belly hurt, then laying down and have it feel fine, the true problem was revealed. On my parents 13th wedding anniversary, I got up and went to preschool, came home and ate lunch, then went down for my afternoon nap. A short time later I awoke screaming in pain with an elevated temperature. My mother rushed me to the doctor, were we got in quickly. All it took was one quick touch on my belly (and the loudest most pain filled moment of my life) before I was diagnosed with a "hot" appendix. I was moved the couple of blocks to the local hospital where I had emergency surgery to remove it. Although unlike a normal infected appendix, mine had essentially rotted. What happened was my appendix was infected, probably heading towards bursting, when I was put on antibiotics for the lung infection. They think that the antibiotics had killed the infection, but the infection had killed my appendix, leaving it to die inside of me. Because of this, it was as serious as if it had burst. I spent a week in the hospital and still have a large scar to this day.

I attended preschool and Kindergarten, meeting friends who I still keep in contact with. Below is a picture of me from my Kindergarten graduation with my "boyfriend" at the time, Leslie.

Around the time that I started first grade, I also started two things that I would be involved in for several years... piano and softball. I played several sports during my elementary years, but softball was always my favorite. While I was never the most athletic, never the quickest, I made sure that I knew the rules and how to smartly play my position. Because of that I spent a lot of time on the field, especially at short stop and pitcher. Where I was lacking in speed and athleticness, I made up for in accuracy. I made due with what God gave me and used it to my full talent. I also began the Piano, playing on the piano that had been in my family since the early 1900's. It is one of my most cherished possessions, one that is now in my home. I took lessons for 10 years and now play for fun. I am stopping this entry at age 8, as that is when my life took a turn due to my CF. Chapter 3 will focus on my life changing up until my teenage years.


Meredith said...

Hope your doing well on day 2 since giving up Pepsi. I know you will persevere! Funny that you mentioned that you like maps and such, I too have a fetish for maps as well. I used to sit with my "Mamaw" for hours when I was a kid and look a maps with her. I have fond memories of doing such and haven't met anyone that enjoyed that past time before. How funny! Still praying in Orlando FL...... Have a great evening and stay STRONG! Meredith/Orlando FL

Beverly said...

Thanks for sharing all this about your experience. I look forward to reading the rest.