I am totally a new woman. My husband says he can’t keep up with me. I always say, “I’m young at heart!”
In 2004, I was diagnosed with dilated cardiomyopathy, caused by a defective gene. It was all through my family. My grandfather died at 36, my mother died at 47 and my sister just died this past March at age 52. I believe that if my sister would have had a care team like mine, she’d still be with us. Unfortunately, she lived in another state with a family of her own so I never could convince her to move in with me, nor transfer her care to Penn State Health Milton S. Hershey Medical Center.
I knew about my family history of heart problems, and I knew I had some heart problems myself—I had a pacemaker, but I did not realize the severity of my condition until I moved to Scranton (about 13 years ago) and saw a new cardiologist. He took one look at my ECHO and said, “You have a big problem. You need to go somewhere else.” I was shocked. He gave me the option of going to Philly, Pittsburgh or Hershey. We chose Hershey, and once we got there it just felt right. There was a wonderful team of people there and they made sure that my family and I were also part of their team, and involved in my care. After a while, we were not only part of their team, but we became part of the family.
The Penn State Heart and Vascular Institute heart failure team diagnosed me with dilated cardiomyopathy and worked with me for two years before I became so sick that I needed to consider next steps.
I’ve always been into fitness and keeping the rest of my body well—even as my heart deteriorated. At one point, my heart was so bad that I walked a mile and a half in an hour! I loved to walk on the treadmill, but beyond that, I had no interest. No interest in running, that is. My sister and I always joked growing up that we did not inherit any “running genes.” So, my exercise continued with walking, walking and more walking, even if it was taking me longer. But—my heart was getting worse.
I knew that doctors had talked to my mom about a heart transplant and she did not consider it. As I became sicker, I wasn’t sure how I would ever react to news that I needed to consider a transplant. Well, that day came. It was just over a decade ago when Dr. Boehmer turned and looked at me, took my hand and said, “It’s time to go on the transplant list.” I felt so comfortable and confident in my care team; I just took their lead.
Three months later I was in the hospital and got the news—there was a heart for me!! My surgery went off without a hitch and I went home nine days later! I spent another three weeks recovering at home. Then I thought I could pick-up where I left off—I even slipped on a pair of heels to go shopping for a new bag to carry all of my new medications. In hindsight—for as sick and weak as I was, I probably should have waited before shopping in a pair of heels!
As I recovered, my strength improved and I was able to return to exercising—which was so important to me to care for this amazing gift I had been given. Remember how I said I was convinced that I did not inherit the “running gene?” Well, with my new heart came a ‘change of heart!’ Wouldn’t you know it, I had so much energy, I started running—and I enjoyed it!
About seven years ago, I ran in my first 5K and realized this was a great way to spend time with my girlfriends, support wonderful causes and honor the boy and his family who had given me the heart to run. Since that first 5K, I’ve run in countless others, two half marathons and even an obstacle course mud run! I’ve also started as a volunteer coach for a youth running program—the Jefferson Jack Rabbits!
As for my family, my husband, Al, still says he can’t keep up with me with all of my renewed energy, but he is an incredibly supportive and loving husband. He built a gym for me in our house, so I can continue to exercise and train year-round. Through genetic testing at the Heart and Vascular Institute, we discovered that my daughter, Sarah, also has the gene that can cause dilated cardiomyopathy. She is being monitored and cared for by our “family” at Penn State and I know she’s in the best hands.
Bittersweet is the best way I can describe the experience of the last 10 years. I am thankful for each and every day that I have with my husband, our family and my friends. And each and every day, I say a prayer for the family who said goodbye to a young boy and made the incredibly difficult decision to save so many lives with the gift of organ donation. I hope it brings them peace knowing that his heart is still strong. This is not just my story, this is our story and I think we tell it well.