Tuesday, May 2, 2017

CF Awareness Month Day 2 - The First Year

Since I was so young at the time of diagnosis, I don't really have many memories of that first year.  Honestly, though, I don't think it was all that terrible (my mom and dad might have a different opinion though, haha), and definitely not my worst (that award is probably a tie between 2014 and 2016).

I do remember (vaguely) those two initial admissions right after I was diagnosed.  I also remember my mom splitting open my enzyme pills and sprinkling them in applesauce during each meal.  Luckily, when I was diagnosed (and for many years later) my lung and breathing issues remained at a minimum - and once I started taking enzymes, my digestion and growth issues cleared up quickly, and I was a healthy, happy kid.  I occasionally did breathing treatments, but they weren't required every day - mostly just when my asthma kicked up with a weather change.

Also, the year after I was diagnosed (1989) was when they discovered the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.  This was a huuuuuuuge breakthrough, and paved the way to a more complete understanding of the disease and also to many of the treatments available today.  I'm so glad my parents were given this glimmer of hope to hold on to so soon after my diagnosis.

I'm sure my parents had a much different view of that first year - I'm positive it was filled with tears, and prayers, and educating themselves as much as possible on how to best combat this disease.  At some point around this time, my mom (who was studying to get her master's in nutrition and become a registered dietician) decided she wanted to do her dissertation on CF nutrition.  The information she gathered at that time, and the updated researched she continued to follow throughout my life had a huge impact on keeping me healthy.

If you're a parent going through the first year of a CF diagnosis for your child, you are not alone!  Please feel free to reach out to myself or one of the other adult CF bloggers!  We would be more than happy to give you information (and, hopefully, encouragement and hope!) about this disease, its impact on our lives, and the current outlook for the future!  I also encourage you to find other parents going through the same thing, as well as some that are already a few years into the CF battle, as they can become friends and lifelines as you pull together your new life during this first year and beyond.

1 comment:

  1. Thanks for keeping up with the posts. This one resonated as we are still in our first year of diagnosis, but our story is a bit different as our son was much older at diagnosis. We are definitely still settling into our shifting new normal.