Volunteer Spotlight: Dawn Carreira

Posted Monday, Jan 22, 2024

From a life-changing diagnosis to a heart transplant at 64, Dawn Carreira's resilience shines through. Read about her CHD story below, and consider joining ACHA at a Walk for 1 in 100 around the country. 

Can you tell us about your heart defect and living life with CHD?

My heart defect, transposition of the great vessels, was not diagnosed when I was born on June 23, 1957. I lived as a normal child until the age of 11, when I had a school physical, and the doctor found something. He contacted my parents and told them something was wrong and had to go to a heart doctor. I saw one who did some tests and referred me to another hospital, Saint Francis—that’s where I had to undergo catheterization in my arm and they determined my condition.

At that time, I didn’t understand. I was a normal kid and everything stopped. My parents told me everything was backwards. We stopped school gym and they kept me underneath their thumb, always afraid something was going to happen. I didn’t have a congenital heart disease (CHD) doctor, just a cardiologist. I lived this life and got married at 16, and had a couple children. At 19, I got my first pacemaker. I worked all different jobs, like being a mason, and my last job was a CNA.

In 2004 when I was 46, my doctor pulled me out of work and told me I had to go to New York and that it was time to go on a on a transplant list. He said I’d be lucky to live to 50, 55 tops. It was too far to go all the time, so I went to a local hospital instead for testing, and they put me on the transplant list. A couple years later they regulated my medicine, which I hadn’t started until my 40s, and took me off the list. A few pacemakers later, one of my doctor at Saint Francis told me he had a CHD doctor starting and would I like to meet him? At that time, we were talking about a third wire pacemaker, as I had been dependent for many years. I had started to struggle, as two wires not enough.

What was it like finally having a CHD doctor and your heart transplant?

I met Dr. Robert Elder and we talked about a third wire, and I had to undergo that procedure. After many wires and pacemakers, Dr. Elder told me it’s time I get back on the transplant list. I asked him if he was really sure. To me this was my normal, feeling groggy. I could never feel my heart, especially once it started slowing down more and more.

I say I didn’t have CHD until Dr. Elder, where he understood more of my heart, and sat down with a diagram and explained and showed me my whole heart and how it works. He asked me, “How old do you want to live to?” My gram lived to her 90s, and I told him I want to live to my 90s. And he said, “that may be challenging with your heart.” I was in denial.

I got on the transplant list on Nov 18, 2020. And on May 5, 2021, I had a CardioMEMS put in to check me all the time and they kept me in the hospital and on an IV drip. I had to stay in the hospital for 3.5 months to wait for a heart. Dr Elder called me while on vacation to tell me when the time had come and there was a heart for me. I had my heart transplant on Aug 12, 2021, when I was 64 years old!

Two weeks after, I got to come home. I could not walk without help, and I had to learn to do most everything again. My husband Peter helped me and my kids came as I needed them. And we got through it all. I got the ultra gift in life and my life went on.

How did you get involved with Walk for 1 in 100?

Just before the Connecticut Walk, I was asked to speak by Dr. Elder. The year before, Dr. Elder gave me a flyer, but steroids and an operation messed up my back so couldn’t make the walk the first time.

In 2023, Anne Reilly (from the ACHA Board of Directors) saw I signed up, called me and said I could join her team and that they’d love to have me there. I looked at my husband and said, can we try to go? We decided to, so I texted Dr. Elder and he also said, join our team! I thank ACHA for being aware of my condition and inviting me to speak at the event.

It was a golden opportunity to share some of my experiences with the 200 people gathered to raise awareness at the Walk for 1 in 100. The walk made me feel like I wasn’t targeted, and opened my eyes that there are many people like me in the world. Sharing the knowledge of some things I have gone through was great for awareness for people to understand that—I did it, and you can do it too. While some at the walk were younger, what they’re going through is what I’ve been through. We heard the stories and about different operations. I know what these other adults with CHD are feeling and there is a big connection. And now I’m hoping more people get involved with or without a personal connection.

 

Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.