A new normal: Life after pediatric heart transplant

"Danny strong:" Life after a heart transplant
Left to right: Tommie Deitz (uncle), Danny Deitz, Terry Deitz (father), Kayla Deitz (sister), Pam Deitz (aunt) and Trish Deitz (mother)

In September 2015, Simsbury, Connecticut, high school junior Danny Deitz had a heart transplant. 

After a few months of rest and recovery, he’s now back at school, returned to the gym and is spending quality time with his friends. Danny shares what he’s learned throughout his experience with cardiomyopathy and heart failure.

All in all, life’s been really great. I went back to school four weeks ago. Getting back into the work was a bit tough at first — I had been doing one hour of tutoring a day, and now I’m in school six hours a day! But I’m getting used to it. I’m basically doing everything I used to, and it’s nice to be back in that routine.

It got kind of boring sitting at home all the time while my friends were at school, but I had friends over on the weekends. And it made me appreciate the little things more. Being at home with family — that’s really important.

“A new normal”

Life’s pretty much back to normal, but it’s a new normal. I have to take medications every day, which is new, but not too complicated. I just bring a water bottle with me to school and take my pills after class.

We all have alarms on our phones, the whole family. So I see the alarm, and then a few seconds later I get a text from my mom.

As for follow-up appointments in Boston, I’ve gotten used to the long drive. I sleep most of the way. We have to leave the house around 4 a.m. for a 7 a.m. appointment in Boston. At first, the appointments were twice a week; then once a week; then twice a month; and now I go once a month.

People ask me lots of questions. One I get a lot is: “Have your taste buds changed at all?” Apparently, that can happen a lot to transplant recipients. But I haven’t noticed any strange new cravings yet!

I also am restricted from drinking alcohol and eating grapefruit. Since I’m not old enough to drink, that doesn’t really affect me much, and I don’t really like grapefruit. Although now that I can’t have it anymore, I kind of want one.

DANNY_STILL_001Looking ahead

It’s great to be working up a sweat again, but I know I can never play football all out again like I used to. I may be able to be a kicker on our team next fall, though, and I’m discovering new sports to try, like golf, paddle tennis and basketball.

I’ll be a senior next year, so I’m just starting to look at colleges. I’m not sure what I will study just yet, but I’m pretty artistic, so I’m thinking about architecture.

I’m not tied down to this region, which is great, because I’ve been looking as far out as California. My doctors say I can go to college anywhere I want.

“I want to give back”

Throughout this whole process, I’ve learned a lot about cardiomyopathy, heart failure and organ donation.

This spring, I will attend the Donate Life gala and am also working with the American Heart Association on promoting awareness of heart disease in young people. When most people think about heart disease, they think about older adults, but it can really affect all ages in a variety of ways.

My family also started a fund called Danny Strong that raises money for cardiomyopathy research and patient care at the Boston Children’s Heart Center.

I just found out that my heart is in the basement of Boston Children’s Hospital now, as a specimen. It made me feel good because the people there — Dr. Kevin Daly, Dr. Betsy Blume, all of the nurses in the cardiac intensive care unit — they’ve given me the best treatment. I want to give back.

Learn more about the Cardiomyopathy Program.