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By Meg Heneberry
I was diagnosed with cystic fibrosis (CF) at age 2 through a standard sweat test, and thus began my many years at Children's Hospital Boston. CF is a genetic disorder that affects mainly the respiratory and digestive tracts, and in me, it mostly ravaged my lungs. The average life expectancy of someone with CF is around 36.
Growing up, my parents didn't hold me back, which helped me never see the disease as a defining feature of who I am. I was extremely active, playing at least one sport every season at school and trying to keep pace with my dad in running. Mom, dad and my older sister, Beth, all helped keep me healthy, making sure I was bundled up when I went outside, administering chest physical therapy (which loosens chest congestion), reminding me to take my enzymes and other pills and doing their best to help me be "normal."
My desire to stay active suited me well throughout high school, as I could play field hockey and lacrosse, and college, when I played for Northeastern University's women's lacrosse team while studying mechanical engineering. Halfway through my sophomore year, I found out that I had B. cepacia, a type of bacteria that can be dangerous if it infects the lungs of people with CF. Unfortunately, it really did a number on me. It became harder to stay active, and my hospital stays became much more frequent, prolonged and troublesome. It seemed like I hit a wall and I began to wonder if my time was running out.
A double lung transplant is usually the treatment for CF patients when they reach this stage of the disease, but I kept telling myself that I wasn't that sick! Sure, I had lost some weight and got tired after climbing stairs, but I was in college and only in my early 20s. So I kept working, graduated in 2006 and started my first job.
After a year of doing everything I could to stay healthy, I got very sick and brutally weak. During a visit to Children's to measure how much oxygen was being absorbed into my body, they immediately admitted me. Within a day, my doctors asked me if I'd consider a transplant. I jumped for it. There was no second guessing, much to the chagrin of some family and friends, who were thinking of the risks and not my current quality of life. I didn't push myself so hard in school sports, or in life, for that matter, to live out the rest of my life, hospital visit to hospital visit, while my brain turned to mush on soap operas. I am better than that.
The next four months in the hospital were excruciating. Weeks of waiting and doing transplant work-up testing were hard, and I was growing sicker and sicker. Finally, at 3:30 in the morning on September 11, I got the call. The surgery was long and difficult, and for the next month I was on a lot of morphine, unaware of what was going on around me. Then, one day, I awoke and stayed awake.
During that long first month of recovery, I lost my hearing, possibly as a result of some bleeding in my brain during transplant or my medications, and my athletic body became an atrophied mess. I could remember walking and running and dreamed of it, but I could hardly roll onto my side, let alone stand up. Soon, I began intensive physical therapy so I could relearn everything—from sitting up, to going to the bathroom to eventually walking. It was probably the hardest battle of my life, but my family was with me all the way. Every day, my parents and/or sister were there, helping me and learning the new things that I would need to know in my post-transplant life. I am also truly thankful for the efforts of the staff at Children's. I plan to not let them down and will triumph over this disease.
In one of my first physical therapy sessions after getting out of the hospital, I was put on a stationary bike and asked to keep a pace of higher than 60 rpms. My therapist started talking to me, and to my surprise I was talking back, keeping pace and feeling great. To talk and move and not struggle to breathe is unbelievable and one of the best feelings I have ever felt. I plan to get back into running, slowly, and try to do some things I would only have dreamt of before this gift was given to me. But for now, I sit back, read lips, take a deep breath and smile.
Patients with chronic illnesses share their lives through an innovative video project
More stories told by Children's patients, families and staff
Inspired eating from celebrity chef Ming Tsai
Ming Tsai is the owner and chef of Blue Ginger in Wellesley, Mass., and author of three cookbooks. He hosts Public Television's cooking show, "Simply Ming," and was the long-time host of the Food Network's hit "East Meets West with Ming Tsai."
"This is a variation on one of my favorite recipes from my childhood," says Tsai. "My mom used to make a version with hoisin, which is delicious, but I've further simplified her recipe to use kitchen staples that every home has all the time. A departure from the standard spaghetti and meatballs, but familiar enough to entice even the pickiest eater, I guarantee this will become a family favorite."
Serves 4
Ingredients
2 large onions, diced into quarter-inches
2 tablespoons minced garlic
1 pound ground beef, naturally fed
1 pound ground pork, naturally fed
4 pounds whole Roma tomatoes (canned is fine)
1/4 cup naturally brewed soy sauce
1/2 bunch Thai basil, leaves only
1 pound spaghetti, blanched in salty water
Extra virgin olive oil for cooking
Kosher salt and freshly ground black pepper to taste
Coat a stock pot over medium-high heat lightly with olive oil and sauté onions and garlic until translucent, about two minutes. Add the meat, season and sautÈ until browned, about five minutes. Add the tomatoes with liquid, naturally brewed soy sauce and basil and bring to a simmer. Taste for flavor and simmer until reduced by 20 percent, about an hour. Combine blanched spaghetti with sauce in pasta pot and eat.
More healthful recipes by Ming Tsai
A photo gallery of Children's patients doing cooking projects
Ezra Jack Keats' simple classic has been a favorite among preschoolers for decades. It follows a young boy's quiet adventures saving snowballs, making snow angels and blazing a trail of footprints as he wanders about in a winter wonderland.
Available at amazon.com.
Local author Jan Brett's book, for children 4 to 8, is a retelling of the "Goldilocks and the Three Bears" tale, set in the icy Arctic; a curious Inuit girl discovers an igloo and finds that the resident polar bears are out.
Available at amazon.com.
Marc Brown, who created the Arthur Adventure book series (and whose characters are featured on Children's Web site), wrote this story for beginning readers about Arthur and his little sister enjoying a wintery day sledding and drinking hot chocolate.
Available at amazon.com.
Directed at readers 9 to 12, Cheryl Archer's book encourages children to get creative with winter-related activities and learn some fun facts, like how snowflakes form, what a glacier is and about the world's largest ice cube.
Available at amazon.com.
It's fact! Eating breakfast is important: Studies in children have found that eating breakfast is related to a better memory, school performance, mood and maybe even a healthier body weight. The many fast, nutritious, kid-friendly food choices available make eating breakfast a simple way to help children stay healthy and achieve their best.
—Susanna Huh, MD, MPH
Gastroenterology/Nutrition
Nickelodeon's "Zoey 101" star, 16-year-old Jamie Lynn Spears, announced her pregnancy this winter. With a young celebrity getting pregnant, what should parents say to their kids? Sara Forman, MD, from Children's Hospital Boston's Adolescent Medicine Department, recently took part in a Q&A about teen pregnancy. Here's an excerpt.
Q: How does the Jamie Lynn Spears situation help parents talk to their kids about sex?
A: It's a wonderful opportunity to engage children in conversation about sexuality. If you don't want your kids having sex at 16, share your attitudes about that. It's also a way for parents to hear from their kids, as opposed to just lecturing them. Parents should share their own values and beliefs, and even if their kids may not agree with them, they will hear them. Establishing an open line of communication minimizes risk.
The full Q&A on teens, celebrities and sex
Children's Center for Young Women's Health's page on sexual health
Grateful patient families give back during NSTAR'S Walk for Children's Hospital Boston, this year on Sunday, June 8.
Register for the 7- or 2-mile family-friendly walks along the Charles River and agree to raise money for Children's life-saving care and cutting-edge research. For more information or to register, call 1-866-303-WALK.
Visit childrenshospital.org/walk
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