Transcription of Deborah Heffernan for the show Women of Heart #182
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Lisa: February is known as heart month and although February is past as you’re listening to this, we still have an active interest in thinking about our hearts. Today, we speak with Deborah Daw Heffernan, who is the author of “An Arrow Through the Heart,” her personal story about how she survived a near-fatal heart attach and eventually required heart transplant. Deborah lives with her husband in western Maine.
Thanks so much for coming in and talking with me today.
Deborah: Thank you.
Lisa: This was a really great book because as a physician, I get to hear people’s stories, but it’s a snap shot. I was able to read your story and I got more of a panorama of your life and what led up to your heart attack and sort of what happened afterwards. This is really a treasure for people who are going through something similar.
Deborah: Thank you very much for saying that. Yes, I think it’s important for physicians as well as those of us who are going through these things that disease happens in the course of a life and you can’t just treat the disease. You have to approach your entire life.
I worked hard to give people a context for what happened to me because my story is not going to be their story. The point is that your story matters and how you manage your illness has to be looked up in the context of how you lead your life and what else you have going on in your life, what pressures you feel.
I think illness can be a swift swording of priorities for people. It can actually give quite a few gifts if you have the proper mindset, so I think, context is everything, and the context is life.
Lisa: And your context was particularly interesting for me because you’re still a young woman, but you were younger 11 when this happened to you. You were 44 years old and you were doing all the things that all of us think that we should be doing to have a healthy heart and a healthy life. You were exercising and you were eating right, and you were maintaining a good weight and you weren’t a smoker, and you didn’t have any of the what we think of traditional reasons for having a heart attack. You were in a yoga class when you actually had your heart-
Deborah: I do not. I was very lucky to be in he yoga class actually, because in yoga, you’re very centered in your body and any yoga teacher [inaudible 00:37:42] knows that the body does not lie. I thank the gods that I was in my yoga class because I was attentive. My teacher knew immediately that I was ill. She didn’t doubt me, she didn’t question me, and immediately got me to the hospital. That ended up saving my life as did my lifelong habit of taking care of my body.
Back to context, that whole context the family background and how you’re raised, and the food you’re fed as a child. We’ve all taken our health very seriously in a household of six children and I was the eldest, and perhaps, we took it more seriously than others because when I was 13, my mother died of a completely separate genetic disorder that people don’t know much about called Wegener’s disease.
Oddly unrelated to what happened to me, but she was the exact same age I was when I had my heart attack, which was immensely hard for my father to see me, his eldest daughter, going through what the love of his life had gone through, lying there in an emergency room, dying. That was very hard on our whole family, but I do have that family strength of a lifetime of habits leading up to actually being in the yoga class when my heart attack hit.
I puzzled that through often, as you know in the book, because you go through many stages of grief. It’s just like Kubler-Ross wrote about the stages of grief. At the beginning you’ve got denial and then, you’ve got anger, and so when I got into my angry phase, I blamed everybody, everything quietly, not lashing out at anyone. Alone in my bed, I would review my life. Whose fault is this?
Then, the worst fault was looking within and saying, “Okay, so, what did I do wrong?” I had to look at this health habit and say, “No, I was doing everything right.” I go to my doctor and say to the cardiologist at Mass General who sees me, Marc Semigran, who is now chief of cardiac transplantation. I said to Mark, “Okay, so, here I was doing everything right and it still happened to me. I could have been a slug lying on couch eating potato chips and watching TV. That would have been more fun in my discipline.”
He said, “Oh, yeah. Sure you could have done that and it would have happened then, too, but the difference is that you were in shape for the fight of your life and most American women are not.” That really brought me right up straight and was yet another motivator for writing this book, because one in six women today persist in not understanding that heart disease is our number one killer more than all cancers combined, and yet, 90% of American women have at least one cardiac risk factor.
It’s not hard to take a walk everyday. It can be squeezed in. You can run up and down the stairs in your office. It can be done. People can eat properly and cheaply. Why are we not doing it? This, to me, is the big mystery of heart disease. This is the one disease that we have a lot of control over and I’m very lucky that I had taken control though a lifetime of good habits because what happened to me was freak and it was still my heart. We still don’t know exactly what happened.
At the time of my first heart attack in 1997, it was undefined. We knew that my left anterior coronary artery, one of the main arteries that pump blood in and out of the heart and feed the heart, that just shredded. The technical term is dissection. No one knows why. To this day, no one knows why.
Today, we have a name for this. It’s called a spontaneous coronary artery dissection. It usually happens to women right in the age group I was. Another sideline is that most women don’t understand that this is the number one cause of natural death among young women, 25 to 44, that is … I don’t mean the SCAD is, but heart disease, heart failure of some kind is the number one killer. SCAD is a very small subset of it.
It’s the number one natural cause of death outside of adverse events and accidents like a murderous boyfriend or cyclone, or something. For all purposes, this is young women’s killer, but I certainly didn’t know that in 1997 when I felt this unbelievable pressure on my chest in my yoga class.
I had happen to read an article in a magazine when I was on an airplane flying to one of my clients that read out the symptoms, and I thought, “Oh. I’m going to memorize this.” My macho mounting-climbing0 husband won’t go to the hospital if this happens to him, but it happened to me, but what happened to me was the small subset called SCAD, spontaneous coronary artery dissection.
Why didn’t we hear about it back then? As I’ve been told, most people don’t have it diagnosed except at the coroner’s because we die outright. I survived one and half my muscle, the left ventricle, was shot as a result of it. I lived then for nine years with half of a functioning heart, which meant I had half the day, half the energy, I’d be in bed by 2:00, dead asleep. My husband would have to wake me at 4:00 to 5:00. We’d go out for a little walk then, so I kept up that routine hoping I could avoid the heart transplant.
Then, in 2006, I had a second SCAD. My right coronary artery exploded this time, this time following a nice gentle massage. Mass General likes to joke that relaxation is not good for me at all, that I should avoid it and stay stressed, right?
I’ve actually survived not one, but two SCADs, a very tiny subset of coronary artery disease, but it exists nonetheless, and it’s for that that I was in shape for the fight of my life because who could have protected it?
Lisa: The transplant, it’s a big deal and it’s not, “Here’s your heart. See you later.” It’s the rest of your life, you have another person’s heart beating in your body, and you need to take are of yourself. You need to avoid infections. You came in and you declined very politely to shake people’s hands because you don’t have immune system. It’s a very real thing, and you take medications that cause side effects like weight gain, so it’s a commitment.
Deborah: It’s an enormous commitment and you’re vetted for that upfront. There are psychological and social factors they’re taking into consideration in preparation for transplant. In addition, how dire your need is, where you were on the list, and your chemistry, your infections, your entire health history has to be taken, recorded, because that very last minute is matched against your potential donor.
In addition to all the biological and chemical exploration of your body which is extensive testing, and you have to pass and fail all the right tests, or you don’t qualify to be on the list.
A big part of that is the psychological and the social. Having a strong, loving network really matters, and I didn’t quite understand why I certainly understood the role of my unbelievably devoted husband my family, and all the kids and we have a very, very lucky, supportive network, and that has gotten me through from the very beginning, but I didn’t understand, because there’s nothing like experience, until I actually began living with a heard transplant. How important that network is.
The responsibility is huge and it’s all consuming. It takes a lot of time. I fool people because I look great. I know I look great. I work hard to stay as healthy as I possibly can. I have gained well over 20 pounds since my very, very sick days. Part of that was just getting me back up to a normal grown women’s weight because heart disease is debilitating, but also issues, say, it’s the drugs. The drugs put weight on.
There are many physical adjustments that you go through. The weight gain for me was really hard because I find having been so thin all my life naturally, and then, thinner because I got so sick. I’m very conscious that I’m [inaudible 00:46:55] weight around all of the time no matter how hard I try to stay slender. It’s really all consuming and I’m aware that that put stresses on my body that can quicken the deterioration of my body, so it’s not a vanity project I’m on.
You just happen to look healthier if you are healthier. It’s just very natural. Look at all the athletes. Have you ever seen and ugly athlete? No. It’s because they’re healthy and they’re blooming with something inside. I tried to go for that bloom.
The immunosuppression is the big challenge in cardiac transplantation. Putting the heart in is a very refined art now. You can watch it on YouTube and it’s actually quite beautiful. It’s like lowering a lovely bloom into the chest cavity. It’s quite a remarkable thing to watch of you have stomach for it, but I was curious. I wanted to see what happened to me.
That, the doctors have down. The issue is immunosuppression which I’ll be discussing more in my next book, “Perfect Stranger,” because it’s a complex journey that I don’t believe has been adequately addressed or explored among the patient population themselves.
As you said earlier, Lisa, people say, “Wow, you’ve got this new heart, so everything’s great, right?” You cannot imagine how many times I hear that. I’m in this conflict because, of course it’s great. I’m alive. I should have been dead nine years ago. Here I am. I’m ecstatic.
I feel like the little kid who goes to her first preschool and experiences her first roll call and people say, “and Deborah Daw Heffernan, are you there?” I’m like, “Yes, I’m here. Yay, I’m here.” Kids don’t realize you never know what you’re volunteering for, but I am here. I’m more present than I’ve ever been in my life .
Illness has actually given life back to me in many ways, obviously, because I’ve had this gift of the heart transplant for which I will be forever, ever, ever, in loving debt to my anonymous donor and his or her family. The other side of it is, and I will put is as Marc Semigran said to me years ago in preparation, he said, “Deborah, in preparing for heart transplant, you have to consider that the challenges you’re facing now in acute heart failure are not going away. They’re just changing to something different. There’ll be different challenges, different medications, different side effects, but it’s not that we will put you back to Deborah in the Yoga class before she moved into reclining [Marichyasana 00:49:57] and felt her heart explode. That Deborah’s body is gone.”
Also, I love how my mind and spirit have advanced, so I don’t regret a lot of the learning. I regret the way it had to happen. He said, “You were simply exchanging them for another set.” It’s an exchange.” Having that in my head has helped me through the immunosuppression exchange because I emerged from my heart transplant ecstatic to be here and have to be careful. There’s that joy, unbridled joy. You can’t imagine it.
With don’t hug me, don’t kiss me, don’t touch me, we have 17 grandchildren, I can’t touch them beyond when they’re in their earliest infant phases. I have only recently started hugging my older grand sons who were like 17, 18, and to feel their big arms around me, man, do I love it, because they’re of an age where they understand that if they have a cold, I can get pneumonia, and if I get pneumonia, I can’t kick it because that is what we die from. We die from infections.
The other side effect of immunosuppression is cancers. Yes, I already have a cancer starting. It’s being watched and if it’s gets more than little spots, out comes the uterus, and I’m fine with that with all the operations I’ve been through; two open-heart surgeries, the heart transplant, numerous defibrillators put in and out of my chest.
I understand that my life is high tech now, but I think a lot of people have no clue that immunosuppression is serious. I think back to my friends who’ve gone through with struggles with aids and cancer and bone marrow transplants, and all these things. The people who live on immune system disorders know deeply what I’m talking about. The others will go through their periods and they understand as well. For a transplant patient, if we do not adhere to our protocols, we’re dead.
I’m eight years out now, almost nine years out. The average life is nine years. I’m certainly going for 35 or 40. There’s a new Swedish study that says the average has been up to 20. My doctor says you have to look at the law of averages. There’s a business term for them. I’m forgetting what the name is, but you have to look out in terms of what you’re doing for your body, how your body is responding, and develop your vision of your future based on that. That’s what I stick with. I don’t look at the data.
I have been very ill. The first five years, I was nonstop sick, but I was grateful that I had in my ear that it’s an exchange because I’m used to being sick and then, when I’m not sick, I’m well, and I’m having a great time enjoying everything that I possibly can.
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Lisa: When can we look forward to your next book?
Deborah: I think in about a year. Lisa, I’m not done with it yet. As you’re interviewing me, I finally got my website written. I’ve updated “An Arrow Through the Heart.” That’s at the publisher. It’s about to come out. The website is about to get launched and perhaps, by the time this aired, both will be happening. That’s been occupying a good deal of my time for the last few months, so I have to get back to “Perfect Stranger.”
Lisa: What is your website?
Deborah: It’s just my name, deborahdawheffernan.com.
Lisa: It really is a pleasure to speak with you. You have quite a balanced view of what it means to have gone through this and to continue to go through this. I appreciate your sharing your story with us and also through the readers with your book, “An Arrow Through The Heart.”
It’s not always that people take the lemons and make them into lemonade, but you’re doing that, and it’s really impressive because there are so many people who would turn bitter after an experience like this, and you haven’t. You have a great view of the world and I appreciate your coming on the show and talking with us.
Deborah: It does take work, Lisa. We do have considerable control over our minds and spirits more than we realize, and it’s a choice to make a lemonade. It’s a choice. I’m also human and I have many bitter and sad moments, but I’ve learned how to shake them off. Again, coming back to Marc Semigran saying it’s an exchange and sort of a Buddhist approach to this is life. Life has the birthday candles and the death watch.
It’s got the whole thing and I think it’s terribly important to experience all those life experiences because everyone’s story isn’t a fairy tale, and I don’t regard mine as a fairy tale, but I do regard myself as privileged to have experience the fullness of life’s meaning at such a young age when I can … I hope to have an impact on others through my books to help them give some deep thinking to how they’re spending these precious lives.
To that end, my husband and I do not keep any of my earnings for any of my book-related projects. We’re lucky to be able to donate it all back to cardiac causes. If anyone is so inclined to buy my book, and I hope they will, it’s all going back to research, so my feeling is if you buy a book, you save a life.
Lisa: Deborah, it’s a pleasure and I hope people will buy your book “An Arrow Through the Heart,” and I hope that hey will go to your website. We’ve been speaking with Deborah Daw Heffernan and I hope you’ll continue to use that wonderful new heart of yours in that ongoing body of yours to continue to bring joy to the world. Thank you.
Deborah: Thanks, Lisa, and thank you for bringing joy to the world.
Lisa: You have been listening to Love Maine Radio, show number 182, Women of Heart. Our guests have included Anne Gable Allaire and her husband, Bill, and Deborah Daw Heffernan.
For more information on our guests and extended interviews, visit lovemaineradio.com. Read more about Anne Gable Allaire in Maine Home Design.
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This is Dr. Lisa Belisle. I hope that you have enjoyed our Women of Heart show. Look forward to our future conversations with Ted Darling with Meg LePage, both of whom balanced, busy professional lives with athletic endeavors.
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