I was diagnosed with cystic fibrosis in 1992, I was two and a half. Before this, I was constantly sick, a runny nose, a thick cough, greasy stools, the usual suspects. Doctors concluded that I suffered from pneumonia from the day I was born, so by four years old my right lung was just a sac filled with infection. I ended up having my right upper lobe of my lung taken out. It wasn’t completely unexpected, because I had been so sick, but for new parents, it was a bit unexpected for parents expecting a healthy child. 

After my lung removal, my parents were ready to start a routine that would improve or stabilize my health, while still living a relatively normal life.  We started nebulizers, chest percussions, and pancreatic enzymes. We had a routine down; we had our new normal. In the early 90s, my doctors thought the more enzymes, the better - I was taking over 20 enzymes with each meal.  Weighing in at thirty pounds, by the time I took all the enzymes prescribed, I wasn’t hungry.  My parents would force me to eat as much as I could, but it wasn’t much.

 

When I was six years old, I woke up with an awful pain in my stomach, and my belly was fully distended. My parents were already worried because I hadn’t used the bathroom in a few days, they were giving laxatives, but nothing was happening. It wasn’t until I started throwing up bile and what looked like feces, my parents knew something was seriously wrong, something more than just a little backup. We went to the emergency room, and after multiple tests, it was concluded that I had a huge blockage. They tried using medication to break up the blockage, but nothing was working. I ended up in the operating room that night. Once they were in my belly, the surgeons saw it was much worse than they expected. My intestines had been chewed away and scar tissue had formed to make the blockage. The concluded that all the enzymes I had taken without sufficient food had needed to digest something, so they ate away at my intestines. 

During surgery they had to remove most of my large intestine, part of my small intestine, and my descending colon.  I am very lucky they were able to save enough that I didn’t have to receive a colostomy bag.  I remember waking up from surgery with a cool belly scar, and a tube that put all my food into a bin – when I ate an orange popsicle, a few minutes later… orange popsicle. At six years old, I thought it was fascinating. Although this was totally unexpected for my parents, and myself, we learned to adapt with the emergency. At this stage in my cystic fibrosis, I was in the hospital for about a month at a time every year, so we knew the hospital well, but never in an emergency, and without a set plan. When I would usually go in the hospital, we would have my grandmother fly down, and mom and dad would arrange plans for work and for my sister. This time, it was as if all the balls were thrown up at once and nobody was around to help catch them. 

 

You never really know what life is going to throw at you, you can have every list, every calendar, your life planned to a tee… but life usually has different plans. You can’t always be prepared for what lies ahead but being able to roll with the punches is a great life lesson to learn. It will definitely make it easier to get through life. 

Help Others Live STRONGER and LONGER- 

   

 

 

 

 

Auburn Volz is a 32-year-old with cystic fibrosis. She had a life-saving double lung transplant in

October 2016, since then she has taken up Orangetheory Fitness to stay active and healthy. She

strives to workout four times a week to help maintain her lung function as well as build muscle

and endurance, as well as some mental stability. She resides in The Carolinas with her two dogs,

Lexi, and Max. In her free time she spends time with her friends and family on the lake.

 

 

 

 

 

   

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***