Breathing Deeply: My Life With Cystic Fibrosis

Lauren never met a meal she didn't like. --my dad

Unlike many of my newlywed pals, I'm no slouch when it comes to meal preparation. I get a kick out of playing the part of the domestic goddess. I genuinely enjoy planning and preparing meals for our family. There is one caveat, however; I am desperately trying to pack on some pounds while my husband is determined to lose weight.

Instead of his and hers monogrammed towels in our bathroom, we have separate groceries. Our shopping list has a little B or L written in parenthesis behind each item, designating whether it is my item or his. I drink whole milk and lactose free milk, he drinks 2% lowfat. I have full-bodied yogurt, he has the "light and fit" variety. Some days I feel like I'm still in college contending with my 3 roommates for fridge space!

As my husband has commendably implemented changes to his eating habits, I've had to relearn how to make sure I'm getting 3000+ calories each day. The tricky part lies in being supportive and encouraging of his healthy eating habits, but still keeping foods handy that I need. I'm glad that he has strong self-discipline and isn't easily derailed by his bottomless-pit of a wife.

When I first took charge of my own eating habits with the help of the CF Team Clinic, it was a lot of trial and error. I was told that I should take in as much fat and protein as I could handle. That's the key phrase: as I could handle. There's a delicate balance that has to happen between the food intake volume and the administration of supplemental enzymes. Over the years I have gone from Pacrease to Ultrase to Creon, which is my drug of choice. (Thank you, Lord, for excellent insurance coverage; those meds ain't cheap!)

Getting enough calories is exhausting sometimes. People often tell me "I wish I could eat like you! You never gain a pound!" Spare me. I would gladly swap places with that person in order to gain a pound. People without CF don't understand how frustrating it is to eat and eat and eat some more, choke down a disgusting supplemental food (don't even get me started on Scandishakes!) and still only weigh 99 pounds soaking wet.

I'm fortunate to actually have a fairly ravenous appetite. Back in high school I could pack away two Double-Doubles, fries and a shake from In-N-Out and call that an afternoon snack. I joke that my four basic food groups are 1) sugars 2) fats 3) salts and 4) artificial flavorings. These days I'm eating healthier stuff, but still in huge quantities. My doc wants to see me gain about 4 more pounds by my next appointment--padding for the winter months I presume--but I'll be darned if I have to get there using foods that I hate. I prefer to meet that goal in a manner of my choosing.

To that end, I've created a great mega-calorie shake. I call it "Rocket Fuel". According to my calculations, it's got a whopping 1000 calories. I usually make one when I get home from work. If any of you CFers out there would like to give it a try, please let me know what you think by leaving a comment at the bottom of this page. Here's the recipe:

"Rocket Fuel"

1 1/2 c. vanilla ice cream
1/2 c. whole milk
1/2 c. Dole pine/orange/banana juice
1/4 c. malted milk
1 Tbls. Twinlab "MCT Fuel" orange flavor
10 strawberries
1 medium banana

Put all ingredients in a blender and blend on high until it is uniform in color and consistency. Enjoy!

I'll probably put some of my other "Signature" recipes on this site in the future. For the most part, Carnation Instant Breakfast is the only nutritional supplement that I can stand to ingest on a regular basis. My philosophy is, it doesn't matter how nutritional/calorie-laden it is, if you can't make yourself like it enough to eat it, you'll never gain any weight from it.

I can do all things through him who is my strength. (Phil. 4:13, NIV)

First and foremost, I am a precious child of God. My genetics may be a bit flawed, but that doesn’t diminish how much worth he sees in me. Although at times I have felt that I was being punished by God to have to live with such a challenging condition, I now see that he can use my weaknesses to reveal his strength and power. Even on the days where I barely have enough energy to get dressed, I know that I can do all things through Christ who strengthens me.

I was born and raised in Southern California. I was diagnosed with cystic fibrosis at birth. I had meconium ileus, and a positive sweat test. I was taken by ambulance to Loma Linda University Medical Center, where I underwent an ileostomy and subsequent hospital stay. Since my parents lived within reasonable driving distance of LLUMC, I benefited from the close supervision of great doctors. I managed to stay out of the hospital for about 13 years.

I was first introduced to a cystic fibrosis team clinic approach when I was in 5th grade, which opened up a whole new world for me! The medical community had made so many advances in their understanding of how to treat cystic fibrosis patients. My first “tune-up” happened when I was in junior high and was followed by a round of home IV therapy. This seemed to do the trick.

I wasn’t hospitalized again until my sophomore year of high school, although I did do some more tune-ups at home. I try to avoid the hospital at all costs, mostly because I’m far too active to want to slow down to that pace. This has sometimes backfired on me, but as I’ve gotten a bit older (and wiser?) I’m learning how to pace myself so that I don’t destroy my health.

During my junior year of high school I didn’t do well, health wise. I dropped too much weight and ended up needing TPN. I had a port-a-cath inserted below my collarbone so that I would always have easy access to a vein. Once again, medical technology had opened a whole new realm of possibility for me. I gained nearly 30 pounds on the TPN and kept most of it on for a couple years.

I never won any perfect attendance awards in school, but I kept up amazingly well. God has given me a sharp mind and a thirst for knowledge that serves me well. Managing CF has also instilled in me a strong sense of self-discipline, which translated into academic success. I was on honor roll throughout high school, competed in Academic Decathlon, edited the school’s yearbook and was president of the California Scholarship Federation.

My parents always encouraged me to participate in as much as was reasonably possible. Although I’m sure they were always a bit uncertain about my future, they never let fear keep me from trying new things. I was active in my church’s youth group as well as many extracurricular activities at school. Sports were never really an interest or ability of mine, so I played French horn in the school band for 8 years.

Even when hospital visits or tune-ups forced me to take an extended break from my active lifestyle, I was able to stay involved. I graduated near the top of my class and went on to earn a Bachelor of Science degree in environmental science. I am currently employed full-time by a very large consulting firm. The best part is, my office is right across the street from my CF specialist and a great adult care clinic.

While in college I made some wonderful friends. During this time I also was introduced to the love of my life. We went to different schools, but we made it work. This summer we celebrated our 2nd wedding anniversary. My husband is tremendously encouraging and supportive. He has never backed down from the challenge of helping me manage my life with CF. From day one he stepped up to the plate and faced things head-on. We’ve already been through a lot together, but our faith and the incredible support system we have in our family and church family has blessed us tremendously.

My life is full of meaning and blessings. My personal goal is to be a blessing and encouragement to others, especially individuals and their families who are touched by CF.