She wrote the book on CHD and mental health (literally)

Therapist and author Tracy Livecchi eventually got the emotional support she needed—and she wants to make sure other CHDers get it too.

Congenital heart disease is a physiological problem. For many patients, it is also a mental and emotional challenge. Not many people are better equipped to talk about this than Tracy Livecchi. 

A clinical social worker and psychotherapist in private practice, she is the co-author with Liza Morton of “Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease.” The book, released in January, offers evidence-based strategies for dealing with the psychosocial, emotional and practical challenges of living with CHD, with dozens of testimonials from patients all over the world. She recently did a webinar on CHD and mental health for the Adult Congenital Heart Association.

Tracy was born with transposition of the great arteries, meaning the two main arteries in her heart were reversed. She had a Mustard procedure when she was 2 1/2 years old and got her first pacemaker at 12. In her 20s, she had at least half a dozen cardioversions, which involves shocking the heart to restore its rhythm. The procedures left her traumatized, but her cardiologists had little to offer in the way of mental health support. She has also had numerous pacemaker-related surgeries.

It took many years of growth—and therapy—before getting to where she is today: an advocate for robust mental-health resources for CHD patients. Now 55, she lives in Connecticut with her husband and two daughters. Here is her story.

How does CHD show up for you at work? Are you public about it?

Now that the book is out, it's going to be pretty public. I don't disclose [my CHD] to most of my clients. Some of them who have CHD I have [disclosed it], if it’s clinically appropriate and helpful to them. Right now, I would say only about 20% to 25% of the people that I see are cardiac patients. The rest are heart-healthy people dealing with anxiety, depression, parenting issues, etc. Luckily, I have been able to work remotely since Covid started, and I'm still working remotely partly because I do work with some high-risk folks, and also I'm high risk. That's one way that I have to think about my work.

Has your health impacted what you're able to do at work?

I would say not so much. I work really, really hard, though, to schedule breaks, to schedule a full hour for lunch and to not take on a schedule that is going to be over my head. I'm lucky that I can control my schedule, and I've been able to do that for years now. If I were working a full-time job and I had an employer and had to go in every day, I think that would look very different.

I spent a couple years working from home, and now we have to go in three days a week, and it's honestly exhausting! I'm jealous.

I remember, before I started working for myself, how exhausting that could be. And I remember I had a really hard time because I was having a lot of arrhythmia back then, and my boss was not understanding at all. It was a really toxic environment, and it fed into my physical symptoms. I did end up leaving because of it. I was lucky that I was in a position that I was able to leave and transition into working for myself. 

How did your parents deal with your CHD? 

They were involved. My mother was only 18 when she had me, and my dad was 21, and this was the 1970s. So my parents did the best that they could. I was treated as my other siblings were treated. There are some good things about that and some not so great things about that. I definitely was not overprotected. They just expected me to keep up, and if I couldn't keep up, they'd pick me up and carry me. We would go hiking, and I remember being on my dad's shoulders for a lot of the hikes, but they never really made a big deal out of it. They always encouraged me to listen to my body and never really put limitations on me or what I could do. That helped me tremendously for a lot of my childhood. I didn't really have fear around my health.

Tracy as a child

You mentioned that there were some potential negatives of that approach or maybe another side to it. What are those?

As a child I wasn't encouraged to express how hard it was to be a kid with CHD, growing up in the 1970s and ’80s. If I would complain about needing to go back in the hospital for the third time as a 13-year-old, I remember one of my parents saying, “Oh, it could be worse, it could be worse.” So not really letting me fully express and validate how I was feeling about the situation that was unfair and that my peers couldn't relate to. They didn't have the language, they didn't have the understanding that somebody who was going through all of these different traumatic surgeries had.

You talked about your history of cardioversions, ablations and pacemaker replacements. What has that been like for you?

In my 20s, I had a lot of anxiety, a lot of worry. It never really was addressed with my cardiac team. At all. I remember going from therapist to therapist and not feeling heard and understood. Once I had a therapist who heard my story and started crying, and I was like, “I don't need this! I need someone who can tolerate my experience and my feelings and support me.” I finally did find someone at age 30, and I was diagnosed with post-traumatic stress. That therapist was amazing. I did so much growing at that point. Today I am able to sleep well and live a full life. I realize that this is a part of my life and will always be a part of my life. But I feel like I've gotten to a place where it's manageable. I know I'm going to have to go back in at some point for surgery. And there's always the risk with a lot of people with my condition. I'm able to continue to be hopeful and to not live in denial, to take good care of myself physically, emotionally, psychologically but to also live the life that I want, doing what I can do and accepting what I can't do.

I could have never done this work with this population until, I would say, my mid-30s. It took a couple years—after having a bad experience—with that great therapist to create a situation where I was able to help others and be okay while doing that.

You met your husband when you were 25. How did CHD impact your romantic relationships? How do you tell a potential romantic partner you have CHD?

First of all, people should feel comfortable telling their romantic interests when they're comfortable doing so. I don't think that there's any prescribed timeframe. You need to just follow your gut in a way. That's what I did with my husband and with people I was dating prior to meeting him. Some guys were fine with it and some weren't. That's okay because those people weren't the right people for me. 

[With my husband] it was actually our third date. We were at a sports event, and I was having some symptoms. I tried to ignore them and I couldn't ignore them after a while. We ended up in the emergency room. So he found out about my heart that way. I ended up being fine. I remember saying to him [in the ER], “You can leave, go home, I'm fine.” He stayed with me, and the rest is history. 

Are there any signals or green flags you can look for that a person is someone whom you can show this side of yourself?

It's hard to know until it actually happens, until you actually tell someone or go through something with them. Somebody who is looking for a meaningful relationship, they aren't just looking to go out and have a good time. But again, it's so hard to know until you actually tell them and see what their reaction is. It's really difficult to predict.

Sometimes it's hard for romantic partners to know what exactly they're signing up for. It's not until something happens that it's like, “Oh wait, this is what this is.”

That's exactly right. That's why I was saying that it's really hard to make a prediction on that. People need to follow their instincts, go slowly, build a friendship with somebody. You want to have a certain degree of trust in an individual before you open up for anything that's meaningful to you. And then again, it's hard to know. For them, it's hard to know as well. Like you said, they might be thrust into an ER visit and not really be expecting that.

What about your scars? Do you love them, hate them, show them off, hide them? 

I don't love them. I've accepted them, and I no longer try to hide them. I wear what I want when I want. I actually have a few bikinis [laughs], which I don't always wear. I've got two daughters who I work very hard to teach positive body image to. [My scars are] part of who I am and our reminder of what I've been through. I remember thinking as a teenager that nobody would ever marry me because of my scars. I truly believed that, but that couldn't be furthest from the truth.

What else is important for us to talk about?

One of the things that happened to me as a young adult was I did fall out of care. I had a cardiologist, but he was a regular non-CHD doc, and he had no idea what to do with me. I didn't have good insurance. When I got a little older it just dawned on me. I got my own full-time job with good insurance. I remember calling the major hospitals in the area, and I finally found a CHD specialist. That was life changing.

There's a huge difference between a CHD doc and a regular cardiologist. I remember when I was probably 23ish calling my cardiology team and telling them I felt my heart racing. They said, “Oh, a lot of young women have anxiety, and it's probably anxiety now.” I was walking around with atrial flutter for years, probably. 

What was life-changing about getting a CHD specialist?

I had more regular appointments. I received some more education about exactly what this defect was and why I was experiencing some of the symptoms that I was experiencing. [My CHD cardiologist] said to me, “If you ever feel that sensation again, come right in.” That was the first time I had heard that this could be dangerous.

For me, it would also have been nice to feel heard in that way, that it’s not just in my head.

Even then, I think back, and I remember being anxious in my 20s. I remember my very, very well-meaning, great cardiologist back then thinking, “Oh, don't worry, you worry too much.” When I think I would've benefited if he had someone there on staff that could talk to me about the very normal feelings I was having. I went in for one of those cardioversions, and I remember laying on the stretcher and the anesthesiologist was going to come in and give me whatever anesthesia they needed to give me. A nurse was there holding my hand. I was crying, and my cardiologist said, “Oh, stop. Why are you so nervous? It's going to be fine.” And the nurse looked at him and said, “She's nervous because she knows that this is a scary procedure and situation.” I think about that nurse a lot because I remember feeling like, gosh, finally someone gets it. Finally someone gets it. Someone understands why I'm in tears or why I'm worrying. And again, my cardiologist was so focused on helping me to survive and to continue to live my best life physically. But that whole piece about the psychological and the emotional side of things was lost.

My fear is that it's still lost in a lot of places because not every center has mental health support. That's something that I advocate for and that I will continue to talk about for the rest of my life, how important it is and how much of a difference it can make in someone's life.  

Tracy’s book

What started you on the journey of writing your book?

It was just a lifetime of feeling unheard and seeing and experiencing a lack of resources and support. I remember being in the hospital at one point in my late 20s, or maybe when I was 30, and I was pretty upset because I had a very unexpected, big surgery scheduled. I asked to talk to someone and they didn't have anyone. And I remember saying, “You need to get someone.” That was the beginning of my mission to talk about this and to demand it with the physicians and the teams that I work with as a patient.

It was a very common thread for [CHD patients I worked with] that they didn't feel heard, they didn't feel understood. It was hard for them to find the support that they needed. Now, this was 15 years ago. Things have changed since then. A lot of these bigger centers are now hiring social workers or psychologists. I started writing back then, and I always knew I wanted to write a book. When I met Liza and I heard that she was also wanting to write a book, we exchanged our outlines and they were almost identical. That's when we decided to work together. 

The goal really is to put out hope, connection and to normalize the reaction that individuals with CHD have to the challenges that we live with our whole lives. There are a lot of books out there for parents of children [with CHD], but none for us over the age of 18. I was infuriated by that. What is going on? This is the number one birth defect. Why is no one talking about this?

What benefits have come out of you having CHD?

There's something called post-traumatic growth, which can occur coming out of a traumatic situation. For me, I have had an easier time figuring out what my priorities in life are and what makes my life more meaningful. It's brought me and certain family members closer together and has positively impacted a number of my relationships and friendships, friends that have stuck by me.

This interview has been condensed and edited.