My Diagnosis

I am one of the 30,000 Americans, 20,000 Europeans, 3,000 Canadian, and any others who has Cystic Fibrosis. My parents are two of the 1 in 20 people who carry the disease without exhibiting any symptoms. Odds of 1 in 4 worked with the cosmos to give me the opportunity of having Cystic Fibrosis. But this wasn’t something I have always known or something my parents had always imagined happening. My diagnosis was a little more surprising than normal…

It was just before Easter in 1999 when I woke up in distress. Using my sister as messenger, I sent for my mom who was just down the hall. When my mom came into the room asking what the matter was, I uttered four words that no five-year-old makes up…

“Mommy, I can’t breathe.”

Of course, a rush to the hospital to see what could possibly be wrong was in order. Upon admittance, X-rays were ordered and the results weren’t the best.

I had atelectasis, or a partially collapsed lung. Mucus had plugged up parts of my airway, completely blocking air movement to the lower lobe of my right lung. I was put on IVs and oxygen tubes in my nose. They used percussion therapy (turning me at an angle that forces my head to look more towards the ground and thumping on my back to loosen the junk in my lungs) and breathing treatments to try to fix it. But my oxygen saturation levels stayed put and I was stuck for about nine days. Easter came and went (turns out the Easter Bunny knows when children are in the hospital!), and I was missing a good chunk of Kindergarten. To make matters worse, the oxygen tubes in my nose were uncomfortable. I wasn’t one to frequently blow my nose, but that was my excuse for removing the tubes inserted in my nostrils. It was working as a good cover up, too, until I fell asleep “blowing my nose” with the tubes at my chin, flowing oxygen into my mouth.

You can imagine my mother’s surprise when my oxygen saturation jumped. She called a nurse and so the calamity began. Not only was my lung blocked up, my sinuses were 100% blocked as well. According the CT scans, there was literally no air flow in my nose. Plans to discharge me from the hospital and set a date for sinus surgery were made.

Before surgery, questions needed to be answered. Do I have certain health concerns, what did my family history look like, etc. One question was about Cystic Fibrosis. My mom looked at the doctor like he was crazy, I’m sure. “No, I’ve never even heard of that.” Well, apparently she should have. After looking at my history of frequent lung and sinus infections, a sweat test was ordered. Sitting in the hospital lobby wrapped up in blankets and sweats, I patiently waited until enough sweat had collected on my arm to give doctors all the information that they needed.

Doctors are never satisfied, I’ve decided.

The sweat test proved positive, but a stool sample was less decisive. My doctor was completely baffled; cases like mine aren’t typical. What do you do with a five year old girl who fits many of the symptoms, a positive test, and a negative test? Apparently the answer to that riddle was a blood test.

Yes, they checked my blood for vitamin levels and the genetic information to find the positive or negative for Cystic Fibrosis.

To this day, I’m not really sure why they didn’t just start with taking my blood, but I guess doctors just like to experiment with situations like this. Maybe it makes their job more fun. If I was a doctor, I might ask people if I could test something just so I could look at them, make that “huh…” face that scares patients so often, then request the test that could give us real evidence. It’s like playing with bubble wrap, popping just a few to start off with almost convincing the bubble wrap it can survive…then laying it on the floor and rolling all over it.

The conclusion was a definite positive. I had Cystic Fibrosis. Finally sinus surgery could be scheduled and changes could be made.

First, I had to be introduced to the Cystic Fibrosis clinic. Lynn the head nurse, James Harris the doctor, and the respiratory therapist whose name I never knew because we called her the “blow blow blow blow lady.” Lynn always stopped by and asked me how I was doing and made sure to find a way to make me smile. Dr. Harris always told me about how much I’d grown and marveled at my amazing case. My respiratory therapist was probably the reason I tolerated anything else; she would come to take me to another room, hand me a tube to place in my mouth for the pulmonary function test, have me take a couple normal breaths, then would shout “Suck in deep!...and blow blow blow blow blow blow blow blow blow blow blow blow! Now suck in deep!” Her encouragement always pushed me to get great results. They eventually became my support group that I got to see 3-4 times a year. I knew what to expect every time I went in and I always got that impressed look from my doctors and nurses.

Now I’m out at college, my first time really away from home for more than a weekend or so. When I come back, the respiratory therapist will have officially retired, I’ll be moving to the adult clinic and saying goodbye to Dr. Harris, and I will be able to tell them that I was taught well by Lynn. Now I stand as a reminder that attitude is everything and encourage awareness within my friends, classes, and family.

The diagnosis isn’t easy; at first I resisted. I would throw fits, deny everything, and refuse to let my mom tell a soul. My mom had a hard time figuring out how to handle the news, herself. A new lifestyle isn’t just mine; I got to take my family on my journey with me. Now, this is how I direct my energy. I’ve learned to take what I have and turn it into something to learn from. Cystic Fibrosis does not define me, I define me. I define who I am through this experience and any other experience I have the opportunity to go through. To those of you who need it, there are support groups out there. Ask your CF specialist about them and talk to your friends and family. 


Just remember, you aren’t alone and you have the power over this, no matter what. Those of you who know someone who is affected, they may just need someone to talk to sometimes, someone to remind them to take care of themselves. Having someone means more than anything. Happy people stay healthier better. Never give up. You have friends, family, peers, specialists, and sixty-five roses going for you.

Keep Hope,

Cystic Sister @----