Jamie Dukat’s KD Strong Story | How I transitioned from pediatric to adult cardiology
How old were you when you were diagnosed with KD? If you were old enough to remember, how did you feel? What was your reaction to being treated for KD? If you were not old enough, what have your parents or guardians shared with you about your diagnosis?
I was six weeks old. I don’t remember the experience, but my parents have shared everything about my diagnosis. My parents were told I was fine when I presented KD symptoms, but they did not listen to the doctors and fought for a diagnosis. Eventually, I ended up at Children’s Hospital in Chicago for months before being released.
What were the outcomes of your KD diagnosis? Do you have coronary artery abnormalities as a result of KD?
I have aneurysms in my coronary arteries, and I am missing fingers on my left hand due to the golf ball-sized aneurysms that block blood flow as an infant. At age five, I had double bypass surgery and a heart attack at age 10, resulting in a stent. The stent closed off by age 12-13, and my heart rerouted itself.
Describe the type of care you have received over the years, how frequently you visit your cardiologist, what type of medications you are on—any challenges you have faced throughout your life due to living with long-term coronary damage from KD.
I received yearly stress tests up until adulthood along with routine follow-ups. I have yearly follow-ups, and I have a stress test every 2 to 3 years. I also take Aspirin daily.
In what ways has having long-term heart damage impacted your life?
As a child on blood thinners, I couldn’t do everything I wanted, especially in sports, due to the impact. I was made fun of due to my heart surgery scar and missing fingers, which made me self-conscious. Having had KD and lasting effects makes me wary daily of what could come next. It worries me if my children will easily get KD or even my grandchildren someday.
When you transitioned from pediatric cardiology to adult cardiology, how difficult or easy was the process? Did you take part in the process? If yes, please describe in detail any steps you took and/or any advice you have for others who will be going through the process over the next few years.
It was extremely easy for me. My stress tests were run at adult hospitals, but I saw a pediatrician cardiologist. When I made the transition, I already knew the hospital and the doctor that would be taking care of me.
What challenges, if any, did you face when committing to your regular follow-up appointments? Did you continue in care, or did you drop out of care?
None. My doctors are amazing.
If you dropped out of care, have you resumed your follow-up cardiology visits? Was your health impacted during the time you stopped going to your follow-up appointments?
I have never postponed care.
What do you do to stay heart-healthy? What advice would you give others who are going through a similar experience?
I eat extremely healthy and exercise regularly. I feel like this is the best way to keep my heart healthy and my body as well. My advice is to get up and get moving. Don’t make excuses and quit saying I’ll start next week. Your health is a priority