May 12 2011

Bob Esparza

“Laughter might just be the best medicine.”

In September 2010, I did a podcast with Jerry Cahill, and I talked about my son Tyler, who is 10 years old and has CF.  In that interview, I said things that I’ve never said to Tyler, and that I’ve only said out loud to my wife and a few other people.  (Podcast can be found at http://www.jerrycahill.com/episode-0094-bob-esparza-being-a-cf-caregiver-parent.)

A few days after the podcast was posted, Tyler and I listened to it.  When it was over, Tyler’s first question to me was: “Will my life be shortened by CF?”  I was crushed when I had to tell him that it might, but that we do the best we can with nutrition, treatments, and exercise.

When Tyler was five years old, he was hospitalized with a bad asthma reaction.  Our allergist decided to do a sweat test because of one or two other symptoms that Tyler displayed.  The diagnosis of cystic fibrosis came as a huge shock to both my wife and me. We were completed uneducated about the disease and did not know anyone in our families that had it.

My wife and I went into over-protective mode for the first six months after Tyler’s diagnosis. We told the staff at school, supplied pamphlets about the disease, had an endless supply of hand sanitizer, and tried to keep him in a bubble. Eventually we saw how our actions scared our son and completely changed our method of caring for him. We came to the realization that there is a difference between living with the disease and letting it control your life. From that point forward, we have worked hard to make sure that Tyler has felt as normal as possible.

Fortunately, Tyler has not been hospitalized since his diagnosis five years ago and only presents mild symptoms. We have been able to take him off of medications and enzymes and rarely have to use a compression vest or have to manually dislodge mucus from his chest. Our doctors at the Children’s Medical Center in Dallas have been amazing and have always been able to stop infections with antibiotics. When I see the struggles that other CF families are going through, I remember how blessed my family is.

Tyler leads a fairly normal, active life for a ten year old boy. He dreams of playing professional baseball player – and we encourage his dreams by giving him access to as many physical activities and sports as possible. We know how important it is for Tyler to remain active and are lucky that he loves to play with his friends and his siblings.

For now, we try to keep the “CF facts” to a minimum. When he asks questions, we answer truthfully, but do our best not to scare Tyler. I know that eventually we will have to have an in-depth conversation about the disease and its impact on his life, but I hope that it will be well into the future and that, by then, we will be discussing the cure.

As a family we love to… play in the pool and “grill out.”
Our favorite vacation spot is Destin Beach, Florida.
Tyler’s favorite…
Holiday is Christmas.
Food is lasagna.
Pastime is baseball.
Movie is Avatar.
Color is red.
Tyler’s family and friends would describe him as reliable.
His role model is Derek Jeter.
His friends and family call him Ty.
Tyler dream of going to a New York City Yankees game.

May 05 2011

Bryan Pendarvis

“Stay positive and love your life.”

I lost my older brother to cystic fibrosis, a disease I also have, on April 1, 2009. Shaun had been my role model, my strength, for my entire life. He was always the first to do a treatment, to try a medication, and eventually the first to have a lung transplant. One year after the surgery, when Shaun was 27, he developed a serious infection that took him away from me. Even though my brother is no longer with me physically, he is always with me in spirit – when I am getting treatments and remembering his encouragement or when I am just having a tough day and can think of his endlessly positive attitude.

My health started to deteriorate when I started college. I was in and out of the hospital, was losing weight, and had little to no energy to keep up with my studies. After a seemingly endless series of tests, my doctor tested my glucose levels and discovered that I had full-blown CF related diabetes. My body could not get the nutrients and energy necessary from the foods I was eating. I am 6’2 and by the time I was diagnosed, I had dropped down to 128 pounds and was so malnourished that I had to have a feeding tube. CF related diabetes has only recently become a well-known issue in the cystic fibrosis community and is sometimes overlooked as the cause of a decline in health. My one wish is that I would have known more about it and its symptoms so that I could have gotten better much quicker.

After my diagnosis and subsequent treatment, I was able to dedicate myself to my studies again. I am a Biology major and plan to get a graduate degree in Microbiology. Both areas of study lend themselves to learning more about the bacteria that can affect CF patients, which can only make me more aware of my disease and how to best treat it. Because I have much more energy and because of my experience with the slow diagnosis of diabetes, I have moved away from being private about my disease and have been campaigning to create a scholarship on my campus.

While my life has not been perfect and I have seen tragedy, I am more determined than ever to reach all of my goals and to live my life positively, the way Shaun would have wanted.

My favorite…
Sports are baseball and football.
Band is 311.
Television series is Dexter.
Holiday is Halloween.
Foods are steak and sushi.
Movies are Donnie Darko and Kung Pow.
Music is rock.
My friends and family would describe me as analytical.
My dream is to vacation in the Galapagos.
My role model was and always will be my brother Shaun.