CF

Keri's story continued. . .

While researching cystic fibrosis, I read stories of loss, but I also read stories of hope.  There were CF patients living far beyond their life expectancy.  I read stories of CF patients getting married and having babies.  While I was still in shock about her diagnosis, I was gaining hope that my baby would be OK.

CF is a genetic disease that affects approximately 30,000 children and adults in the U.S. (70,000 world wide).  Despite the increasing median age of survival, CF remains fatal.  The disease is caused by a defective gene that causes the body to produce an abnormally thick, sticky mucus, which leads to chronic and life-threatening lung infections and impaired digestion.  In the 1950's, few children with cystic fibrosis lived to attend elementary school.  Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.  Many people with the disease can now expect to live into their 30's, 40's, and beyond.

The best treatments and therapies for cystic fibrosis vary from person to person.  Taylor sits through 30 to 45 minutes of breathing treatments and chest physical therapy two times per day when she is well and four times per day when she is sick.  During chest physical therapy, she uses a vest that shakes her body to clear the mucus.  She inhales three different medicines in the morning, and two at night.  She also takes numerous other medicines just to help her stay alive.

Like many people with CF, Taylor's body does not digest her food so she must take enzymes with everything she eats.  She takes four pills with her meals, and three pills with her snacks.  Forgetting her enzymes means she will end up with a really bad stomachache.

Taylor has lived a relatively health life and is really good about doing her treatments.  She has struggled with her weight in the past, but over the last six months she has gained 17 pounds.  This is quite an accomplishment as she usually loses weight or only gains a few ounces between each clinic visit.  We are also fortunate that her lung function remains over 100%.  Taylor has only been hospitalized one time when she was one year old.  We are so thankful for this as many CF patients spend a lot of time in the hospital on IV antibiotics.

Taylor has had four sinus surgeries to remove polyps, which are common in CF patients.  More than likely she will have another surgery before she goes back to school.  Luckily she recovers quickly from the surgeries and has an amazing team of doctors who take great care of her!

Taylor is much like any other 13-year old girl.  She loves hanging out with her friends, going to school, playing soccer, and much more.  The difference is that we have to fight to keep her healthy each and every day.

I love the hope that Keri, Taylor and their family have.  They believe in a cure, knowing that one day CF will stand for "cure found."  Some of the steps Keri took to find her hope were education, following doctor's instructions and advice, and effort.  You'll find out more about that effort tomorrow!