"I try to reassure everyone who has been affected by this disease that CF isn't the end of the world if you don't want it to be."
The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.

Valerie Batz

Go to Valerie's May 2011 podcast with BEF's Jerry Cahill.

Valerie's Story

My Name is Valerie Batz, and I am a 52-year-old woman living with CF. I am 13 years post-transplant and loving life!

I was born in 1959 in New Hampshire and was diagnosed at 22 months of age. At this time, my parents were told I would not live to attend elementary school, and look at me now! I was one of three children, the middle child to be exact. I have a younger sister who is now 48 and does not have CF, and I have an older brother who is now 53, and he is living with CF as well. Growing up, my brother and I were treated normally, and I am forever thankful for that. My family did not live and breathe CF; each day just became a routine, and taking enzymes and medication was just like taking your vitamins. Other than complying, I also stayed active. I was a cheerleader throughout school, and I also enjoyed sailing in Lake Michigan with my family, along with skiing and swimming. I am very proud to say that I passed the lifeguard test even though my doctor said I never would. Other than coughing day and night, along with stomach aches time to time, I have led a very normal life.

After high school, I attended the University of Illinois, where I majored in international business. I also learned to speak both French and Spanish and was lucky enough to have the opportunity to study in Paris. I never let CF hold me back!

Valerie on Family

I have been married to my wonderful husband, Jay, for 24 years. We have 22-year-old twins, Jayson and Jamison, who are both graduating college. Neither Jayson nor Jamison have CF. Being able to have them was such a gift, and my biggest joy in life is my family. My first goal in life after my children were born was to see them graduate high school ... then to see them graduate college ... and now it is to see them get married. My other goal would also be to see a cure for CF in my lifetime.

Valerie on Her Transplant

Although I grew up living a very normal life, when I was about 40 years old, my health quickly went downhill. At this point in time, I had to stop working due to my lungs plummeting down to 30% lung function. I weighed less than 100 lbs, was on full-time oxygen and a feeding tube, and my doctor made it clear that I didn’t have much time. I mentally and physically prepared myself for the fact that CF was defeating me, and then I got the call. I was transplanted the next day, and the very second I woke up, I took a deep breath and smiled.

Life after a bilateral lung transplant has truly been a blessing. There is no coughing, and I feel like my lungs are two brand new beautiful pink balloons, as opposed to the old smashed ones I used to have.

Valerie's Mission

Today, I believe there is not enough I can do for CF. I’m a guest speaker on CF and organ donation in health classes and local high schools, and I feel it is my duty to give back and promote donating life. I have lived life well, and being blessed enough to travel the world and live to enjoy my family, I am very content with where my life has taken me.

A Fun Fact About Valerie: Her favorite holiday is her transplant anniversary, which she calls "Rebirth Day."

Favorite Food: Italian

Favorite Pastime: Reading

Favorite Color: Burgundy

One Word to Describe You: Spirited

Hobbies: Love to sew and cook

You can find Valerie on: Facebook and CF Great Strides

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