Tuesday, September 22, 2015

My Life With CF

Well hello there!

My name is Savannah, I'm 17 years old and I have Cystic Fibrosis (CF for short). I was diagnosed with CF at only 8 months old due to "failure to thrive." That means I wasn't gaining any weight, which is a classic symptom of CF.

From the outside looking in, you would never know I had CF. However, there is a ton of effort that goes into maintaining my health.

That's me ^ at an Ed Sheeran concert :D

So, a little technical background about CF.  It is a genetic disease and it mainly affects the lungs as well as the pancreas.  In order to have CF, you have to inherit one abnormal gene from your mother and one abnormal gene from your father.  When you have CF, it causes thick sticky mucus to build up in your body, mainly in the lungs and pancreas.  Unfortunately, this thick mucus is a great breeding ground for bacteria to grow and typically leads to lung infections in people with CF.  Also, once you have bacteria in your lungs, it's very hard to get rid of it permanently.  I currently have two common strains of bacteria; staph and pseudomonas.

While I do not, many people with CF have liver and sinus problems.  However, my pancreas, like almost everyone with CF, is affected.  The thick mucus blocks the ducts in the pancreas.

Because the ducts in my pancreas are blocked with thick mucus, I have to take synthetic enzymes before eating so my body will digest the food and absorb the nutrients better. I have bottles of enzymes all over the house and keep a pill case full of them in my purse for when I go out to eat. I take anywhere from 3-5 enzymes prior to eating, depending on the richness of the food I'm eating.  And that's not all...I still need to supplement with daily vitamins to make up for the nutrients that the enzymes didn't help absorb.  Sometimes all of these pill make me full before I even start a meal!

To thin the mucus and help prevent infections, I do 3 or 4 breathing treatments every single day.  I also do my vest twice a day, 20 minutes each time.  Breathing is most difficult for me when I wake up.  I always start my morning with a treatment and I make sure I do one anytime before I leave the house, just to ensure I feel the best that I can. Often times that means waking up an hour earlier than most people would or leaving a bit later than you would have liked, but you gotta do what you gotta do. :) And for me, health will always come first.

Along with breathing treatments, I also use a mechanical vest each day that literally shakes my insides to help loosen the thick, sticky mucus in my lungs.  As a result I cough the mucus up and out.  It's not my favorite thing to do, but better out than in!  And speaking of coughing, it is common for people with CF to cough a lot.  I'm lucky that I usually only cough during treatments or when I'm sick.  Don't worry if you're around someone with CF and they start coughing.  They are just tyring to get the mucus out of their airways.  They will not make you sick--well, unless they have a common cold or something else that is contagious--but you can't "catch" CF.

After using my nebulizer, the nebulizer cups have to be sterilized before I can use them again.  I use a baby bottle sterilizer to clean my nebs.  If they are not sterilized with hot steam, they may harbor germs that could possibly cause an infection in my lungs.

Growing up, I was always encouraged to participate in all kinds of exercise.  I have taken ballet, tap, taekwondo, yoga, aerobics, and currently I enjoy weight training 3-4 times a week.  Exercise is important to give my lungs a workout as well as the rest of my body.

Four times a year I have to go to Columbia, SC to visit my pulmonologist, a doctor who specializes in lugs, to have different tests performed. The reason we have to travel 3 hours away to Columbia to see the pulmonologist is because they have to be a center that is certified by the Cystic Fibrosis Foundation to treat CF patients, since it is a rare disease. 

One of those tests is a pulmonary function test (PFT for short).   During this test, I fill my lungs with air and blow into a tube as hard as I can until they are empty.  It measures different capacity levels that my lungs can hold. 

If my numbers are even par with what I have had in the past, that’s great.  If my numbers fall below where they were in the past, my doctor may want to admit me into the hospital or start me on home IV antibiotics.

So, if you’re wondering…here’s a breakdown of my typical day.  Currently I am homeschooled, so this is not an "average" schedule, but it is genuinely what I do everyday. And I can work this around what I'm doing on a particular day. This is just what it would look like on a day where I'm just chilling at the house. :) 

9:00 am - Wake up and do my first breathing treatment

10:00 am - Eat breakfast with enzymes, then take my first round of morning meds

11:00 am - 2:00pm - Do school work for the day

2:30pm - Eat lunch with enzymes and take afternoon meds

2:30 - 3:00pm - Do afternoon breathing treatment with The Vest

3:00pm - 4:00pm - Exercise

4:30pm - Have a snack such as fruit or cheese and crackers

5:00pm - Take evening meds

7:30pm - Eat dinner with enzymes

8:30 - 9:00pm - Do nightly breathing treatment with The Vest

Now if I went to "regular" school this schedule would be so much more difficult to maintain. Not impossible, but definitely challenging. That's why my parents and I found it best for me to just do online school. 

I’ve never let CF stop me from anything I want to do. I feel just as normal and anybody else. Even though I have a lot of extra things to do each day, I still live a pretty normal life.  I love to read, paint, take photos, travel, cook and hang out at the mall.  I also work part-time for a make-up artist.

Snapping some pics in NYC this past May 
Afternoon tea before the Ed Sheeran concert

In front of the Eiffel Tower, May 2014