Women of Heart #182

Ann Gable Allaire:

Yeah, it was a process, it was a shock, and yet there was some relief knowing that there was something that he could do. Listen to not knowing is oftentimes worse than knowing what you're dealing with.

Bill Allaire:

I believe I'm supposed to be in charge here. I'm supposed to be. I should figure out this and have the money available and I should have, should, should, should in this situation. I realized finally that I could step back and let friends come in and do what they wanted to do to help us. And they did.

Deborah Daw Heffernan:

I think illness can be a swift sorting 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.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle and you are listening to Love Maine radio show number 182, Women of Heart, airing for the first time on Sunday, March 8, 2015. Heart disease was once known as a disease of men, and older men at that. Today we speak with previously healthy women who had sudden, unexpected heart trouble at relatively young ages. Their diseases were so severe that they required heart transplants. You'll be surprised and inspired by our conversations with artist Ann Gable Allaire and her husband Bill and Deborah Dahl Heffernan, author of An Era through the Heart. Thank you for joining us. As a doctor, I've spent a fair amount of time talking with people whose lives have been changed dramatically by medical issues that have cropped up suddenly. And the individuals that I'm speaking with today know all about this. I'm talking with Ann Gable Allaire, who is a Maine artist who in 1997 was diagnosed with a medical condition necessitating radical procedures. She underwent a heart transplant and stem cell trans transplant within less than a year of each other. Her husband, Bill Allaire, recently penned a book about that experience called Miracles Do, a story of medical and spiritual survival. Thanks so much for being here, and congratulations on being here for both of you.

Ann Gable Allaire:

Thank you. Thank you for inviting us.

Bill Allaire:

Yeah. It's nice to be here.

Dr. Lisa Belisle:

You are. This is quite a story. And I know your daughter Kate, who works here at Maine Magazine as the art director, and I didn't realize that your family had gone through so much back a few years ago. It was very dramatic, the way that this all happened. From reading Bill's book. You were at work one day. Your boss heard a noise from the other room. He came in. You had collapsed on the floor. Why don't you tell the story about this? Or maybe Bill can, because I guess it's between the two of you that you've sort of pieced it together.

Ann Gable Allaire:

I'll let Bill begin.

Bill Allaire:

Well, that incident occurred because he was late for work. Work. Excuse me, late for an appointment, I guess would be a better way to say it. He was leaving the building, he heard this noise, and he walked over to the copy room and found Ann on the floor. And he couldn't revive her. They had to call the local MDs, but the local EMTs, and they came up and had to defibrillate her to get her heart going. So that was the incident. Yes, or boss was there. Thank God. The only person in the building besides her at the time. So if he had left, she wouldn't be here today, or I wouldn't have had to write the book.

Dr. Lisa Belisle:

I guess your heart had completely stopped.

Ann Gable Allaire:

That's what I heard.

Dr. Lisa Belisle:

That's what you hear. And you didn't have any reason to believe that this was going to happen. You hadn't been ill that you knew of?

Ann Gable Allaire:

Well, I had some episodes of feeling faint and passing out. And I'd actually been evaluated by a local cardiologist who. Who said, oh, you're fine, you know, after the passing out incidents. And he said, your heart wall's a little thick, but some athletes have that. And since I'd been running and was in really good shape, I thought, oh, must be very athletic. So there was indication that something was off, but nobody knew or, you know, we couldn't figure it out. So this was. This passing out was a definitive moment because then I had to really. We had to find some more answers.

Bill Allaire:

She had actually passed out in March of that year and hit the ground face first, just before we were going to take a little short vacation up in Portland here. So she looked like she was the victim of domestic abuse. But she was okay when we brought her to the doctor's office.

Ann Gable Allaire:

The snow hitting the hard, cold snow is what brought me out of it that time.

Bill Allaire:

And then she passed out again in May in our home. I heard a thump upstairs and ran upstairs and found her on the bed, pale as a ghost white. She'd hit the ground again by the bathroom door and then walked over slowly to the bed. We found out later from the doctors that those two incidents preceding the incident at work were probably by hitting the ground, actually struck her heart and brought back her rhythm. If she had landed the way she did, which apparently was on her chest both times. So I said that was probably the only reason she came out of it then. But this third time, however she landed or whatever happened, it wasn't going to come back on its own. So that was during the 97 the years happened. Her evaluation before that had been by a doctor who she wasn't feeling well once in a while. And he said, you know, well, apparently that's just due to the athletic heart. Well, now we know it was because of amyloid.

Dr. Lisa Belisle:

Well, talk about that. That's an interesting disease that not everybody knows about.

Bill Allaire:

Well, it's primary and secondary. Secondary is inherited. Ann has primary or had. Primary has primary. It's a disease of the blood, so it's treated like leukemia. It's protein in the blood that, for whatever reason, they still don't know, attaches itself to an organ of the body. Could be your eyes, could be your liver, could be your heart.

Ann Gable Allaire:

Not your eyes with that one, though.

Bill Allaire:

Oh, I'm sorry. That's true. That's true. Secondary is where it usually affects the eyes. But anyway, what it does is a protein begins to attach itself to that organ, whichever organ it happens to be. And what it does is it renders it petrified after a while. But the problem with the disease is a lot of people have it. The initial phases of it come on like mononucleosis. So you just think, well, you've been lethargic, don't feel good, you go to the doctor. Most of the tests won't show anything unless you're looking for additional amounts of amyloid in the blood. And so to have a specific test for that, well, most doctors wouldn't think to do it.

Ann Gable Allaire:

In fact, if I can interrupt here, the waiting room at the amyloid treatment center at Boston is full of patients who have stories like that. Nobody could figure out what was wrong with them. And some were even told it was in Their head. They needed to go see a psychiatrist. I think at that time, it was particularly difficult to trace down and diagnose. I think that's changed now. There's more awareness of it anyway.

Bill Allaire:

And as I pointed out in the book, we only became aware of it simply because by chance, we call the God moment. We ran into an oncologist at the hospital who knew Ann, who just happened to be on the floor, didn't even know she was in the hospital that day, and walked by and said, ann, what are you doing here? It's in the book. And he said, you know, that sounds like something I studied at bu. Let me check with your cardiologist. And so, sure enough, they tested for amyloid. And of course, that's where we were. Southern Maine Healthcare. They could not treat it there, but, I mean, the only place to treat it was in Boston anyway. So we were very, very fortunate that we ran into him because she was going down to have her pacemaker installed when he ran into her. And he said, the pacemaker you're probably going to have to have anyway. So he kind of gave us an indication that what we were doing was the right thing anyway. Even though we weren't wild about having the pacemaker put in for a condition, we didn't even know what they were putting it in for.

Dr. Lisa Belisle:

So you've collapsed, your heart stopped, they revived you. They got you to Southern Maine Medical Center. You learned you had to have a pacemaker, and then all of a sudden, you have this much bigger disease, and it's about a transplant. You're actually gonna need more than just something to restart your heart. If it stops, you're gonna need to have your entire heart taken out of your chest and replaced with someone else's.

Bill Allaire:

Yes.

Dr. Lisa Belisle:

That must have been quite a shock.

Deborah Daw Heffernan:

Well, possibly.

Ann Gable Allaire:

We had to be evaluated first to make sure that was the right road. So we went to Boston Medical for four days, and that kind of got me used to the idea where they diagnosed it, and then from there went to the Mayo Clinic. So it was a process, it was a shock. And yet there was some relief knowing that there was something that I could do. Just the not knowing is oftentimes worse than knowing what you're dealing with.

Bill Allaire:

I believe that was scary because we. Exactly. Even having the pacemaker put in, as I said, we didn't know what for. We only know that it was going to help her heart maintain a rhythm, but we didn't know what was the root of all her problem yet. We still have no idea. So when we Went down there and Dr. Falk, who was the amyloid cardiologist at Boston University Medical center, put us through some testing. He said, you know, your heart is going to need. You're going to need a new heart. It's only running at 40% capacity. You would not survive a stem cell transplant without a new heart. So there was no one in the country that would give her a heart transplant, except the Mayo Clinic because they were working closely with BU on a cure for amyloid. And they were looking for the right person also to have this treatment done this way. Because it's very unusual, as you would know as a doctor, to have a transplant before the disease is eradicated.

Ann Gable Allaire:

Can I interject that? Dr. Skinner, Martha Skinner, who's at that time the head of the amyloid research department, met with her. We met with her and I'll never forget sitting on this side of her desk and she said, oh, here's your treatment plan. And she had a yellow legal pad and she wrote in pencil, I think it was one new heart and one stem cell transplant. And she pushed the pad across the desk to me and I said, I thought, oh, okay, I can do that. Because when somebody wrote it down for me. And she was very kind and very wise and I trusted her and so I. All right, okay.

Bill Allaire:

She was a wonderful white haired lady. You'd love to have her as your aunt or whatever. Grandmother. She was a wonderful, very soft spoken and very, very smart lady.

Dr. Lisa Belisle:

Obviously, for the two of you, you also, I mean, I know that the spiritual aspect of all of this was so important. You have a quote in here, Bill. If the head and the body are to be well, you must first cure the soul. And this is from Plato. And you've already referred to one of these, a God moment, that you've called it, where your boss was late for an appointment and he happened to hear you go down, so he was able to kind of pick you up there. And you came to really rely on a lot of God moments and God people in your life to help move all of this forward. Because Dr. Skinner saying one heart transplant, one stem cell transplant, that meant people had to help take care of your house, help take care of your adult children, help raise funds. I mean, you were really relying on your community to make this all happen.

Bill Allaire:

We were relying on the God of our higher. Our higher power, the God of our understanding anyway, to help us somehow. And that was the spirituality of it. And of course, the spiritual part for me was overcoming the desire to drink. I was an alcoholic. I am an Alcoholic. And thank God, I really kind of reached deep to avoid drinking for the pain that it was causing me to think of my wife maybe losing her already. You know, we had just been married for a year and a half. We'd been together for about seven years. We'd just been married a year and a half. And that was very frightening. And I do remember in the book writing about which actually happened, I remember yelling, please, God, help me. As I drove by Cappy's liquor store leaving Boston, and I said the serenity prayer. And I just kept going. And about a mile later, I think I smiled. Thank God I did that. And that was a turning moment for me, because then I knew I was turning it over to a power greater than myself to help me, which meant that power could work through our friends. As you said, what are we going to do with the house? What am I going to do? When I got there, I had planned to sell the house, perhaps maybe work also. And I. Well, I was definitely planning to work, but fortunately, our community came behind us and really helped us a lot so that I didn't have to work and we didn't have to worry about the money angle.

Ann Gable Allaire:

I think that turning it over was important when you get to. I felt personally, you know, I was at a point where what else could I do that was. We always have choices, but that was what I chose. And our friends, you know, we didn't even know that help was out there until they came forward. And so part of the growth in this was learning to receive instead of always being the one helping others or doing, you know, that feels better, that feels more empowering. But it's really. It's difficult to let yourself be vulnerable enough to receive help. And we did. And it was in that spirit that we accepted it because we knew it wasn't of our making. We didn't go looking for it. We didn't ask to raise funds. They just did it. God did for us what we couldn't do for ourselves.

Bill Allaire:

Exactly. And I can remember thinking to myself, as a man, you know, I'm supposed to be in charge here. I'm supposed to be. I should figure out this and have the money available. And I should have. Should, should, should. And, you know, all the shoulds in your life can go out the window. And I did this time because I could recognize that once I stepped back and let the people who wanted to help us help us, then I could be with Ann and be her spiritual and moral support, rather than someone who's always running around with his Head trying to figure out how to do this and that. And things came together much easier that way once I let go of being the man responsible. And that's an issue that fortunately in AA we talk about a lot. Giving up control. You don't have control. Most of us don't. We just don't realize it. And I still take it back a lot. You know, I'm not cured. You know, I still try to control this, I can try to control that. But you basically in this situation, I realized finally, while we were still at bu, thank goodness that I could step back and let friends come in and do what they wanted to do to help us. And they did.

Ann Gable Allaire:

We had to do our part too. I mean, and that is being advocates for. I had to be an advocate for my own well being and health care. And Bill was there doing the same for me, for us. And we had to make sure that we took care of ourselves physically, mentally and spiritually for any number of reasons, for surviving the ordeal and for just because.

Bill Allaire:

Yeah, it was very, very frightening for quite a long time. I guess that's a good word to use. And even stepping back, watching things happen around us, it was good because there were, as you point out, there were these God moments that came in that reassured us. You know, even the call I got from our friend when I was home before, as I said before we left from bull telling me they were starting up a fundraising committee, I thought, well, you know, I wasn't aware that they were going to come up with the amount of money they did. I was thinking in smaller amounts, you know, it would help us out a little bit. So it was quite a. Quite. It was redemptive, I guess.

Ann Gable Allaire:

Well, it was such a positive affirmation for what the human spirit can do. There was so much support and it was just a groundswell of support in the community. The blood drive they held, it wasn't for me. I didn't get the blood personally because the system doesn't work that way. But there was so much, I don't know how many. They had all kinds of records that 222pints of blood.

Bill Allaire:

They usually gather at most 40 or 50. That's a good drive. So they had 222 people lined up at the Kennevon High School gymnasium to get in.

Ann Gable Allaire:

You often see or hear about disasters or things where people are in need and the community rises to the occasion. That's so wonderful just to see that happen.

Dr. Lisa Belisle:

And they continued to support you when you went out to get your heart transplant. When you were at Mayo and you were there for quite a while.

Bill Allaire:

Five and a half months.

Dr. Lisa Belisle:

Yeah. That's a process.

Ann Gable Allaire:

It is. Well. And we left our home to go to BU where I could be evaluated. I thought we were going to be gone for. We thought we were going to be gone for three or four days for the evaluation, but I didn't leave BU because I needed to be monitored. And then we flew right to the Mayo Clinic. So I felt a little bit like Rip Van Winkle because how many months later did we come home?

Bill Allaire:

Well, it was January 15th, and we left August 1st. So it was quite an ordeal. Yeah. Rip Van Winkle. I guess so. And, of course, Dr. Falk had told us before we left BU he said the heart transplant is very important. I certainly hope your evaluation comes through. He says, I think it will because Ann has, at best, six months to live. And we didn't realize how advanced the disease had gotten until I heard that.

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Dr. Lisa Belisle:

Describe the process of waiting for this new heart and knowing that in order for you to get a new heart, somebody else's life would end up no longer existing.

Bill Allaire:

That was the worst part.

Ann Gable Allaire:

That's the worst part.

Bill Allaire:

Yeah, that was the worst part.

Ann Gable Allaire:

Not knowing and at the same time trusting that the right heart was going to be found. And that's a very, very spiritual experience. I can't put it into words. It's such a privilege and such a gift. I don't know the family I've written. I wrote to them after I was home finally, that February, a letter of gratitude. And I had to send it to a clearinghouse where they keep them. And then the families asked if they want to read it, and they weren't ready. I don't know if they've ever read matters, but it doesn't really matter because I have so much gratitude. And we pray for them every day. I do.

Bill Allaire:

They were friends of ours who lived in the Minneapolis St. Paul area. And I can remember waiting that night when we got the word of it. They told us the next day that there was a young girl, 14 years old, who was killed in an automobile accident. And we have every reason to believe, because a couple of the doctors did mention it was a young heart, that that may have been the heart that was given to us, given to Ann. I mean, it just brought tears to our eyes at the time in mind, too, to think that some young girl, you know, it had to give her, had fortunately been an organ donor. But her parents maybe allowed that, I'm not sure. But we don't know. Again, it's a mystery to us. And it shall always be a spiritual moment in our life to know that someone gave something so precious as their daughter's heart to my wife. And so that was a big deal when we heard that. And I thought, well, maybe we'll find out someday. We still don't know. But we do know that the heart was an incredibly good match. That's one thing that we've been very pleased about.

Ann Gable Allaire:

There was one time, just before that my heart became available, that they thought they had another one. But that was a false alarm because it turned out not to be a good match. They know that ahead of time when they saw it didn't go through. And even then we thought, well, it must not have been the right one.

Bill Allaire:

In all, it was 52 days. And that erroneous heart, I guess it was the blood type, I forget. But whatever it was, I think that was around the 43rd, 44th day. So we Waited another week or so, and finally the word came. And even then it was like midnight and I was still waiting until they pulled the gurney up.

Ann Gable Allaire:

I was so sure that was the right one and it was going to be fine. It's hard to describe that feeling, but I just felt calm and peaceful and excited.

Bill Allaire:

I was wound up like a drone. She's calm. She's getting a new heart. I'm going crazy.

Dr. Lisa Belisle:

So tell me about this new heart that you have beating in your chest. You're an artist. You're very well known for the work that you do. Has this changed your sensibilities in any way? Has this changed? I mean, is there anything for you that is coming across differently, artistically or otherwise, with this new heart?

Ann Gable Allaire:

No, I think I've grown and my work has matured probably because of the experience, but I don't think it's. I don't think it's like the stories you hear that somebody suddenly craves french fries and they never did before, something like that. But I just know I'm always aware every day of what a gift it is. And that's life changing. So, yes, it's probably affected my work in that way, on a spiritual level and affected my work in that I'm here to do it.

Bill Allaire:

It's quite a gift. And I realize myself in writing this, that I wasn't sure how it affected her work, but I did know that just like she said, she is here to do it. And that was the amazing part, because six months to live and now 17 years out, we've just had her evaluation and she came through with flying colors. So this is 17 years later, and

Dr. Lisa Belisle:

yet things weren't all done.

Bill Allaire:

No.

Dr. Lisa Belisle:

Because in 2011, you, Bill, were in downtown Kennebunk at an AA meeting, and all of a sudden you heard sirens going by and something else was about to happen after all you had been through. So describe that for me.

Bill Allaire:

Well, I was downtown at a meeting and I heard the sirens just before the meeting ended and went outside and was talking with somebody. And it just didn't arouse any worry because we live near the turnpike and they always have the ambulance and fire truck, excuse me, police cars go by for accidents that are on the turnt bike. So I didn't think anything of it until I was driving home, going down Fletcher street, realizing that there's a police car I had to pull over for. And as I turned a corner near the high school, I suddenly realized that police car was going down my street. And I'm thinking, oh, my God, I wonder which neighbor is having a problem. And I got to my house, and I was just terrified, just plain terrified. I just saw all of a sudden, two ambulances, three police cruisers, and they had already broken in the door because I wasn't home yet, and had found her on the floor again, comatose, I guess, lifeless. Anyway, in many ways, she was. She. But then they woke her up. She. She was screaming, and I got her on the gurney, and they got her on the gurney and out into the ambulance and on her way, and I had to watch this. And fortunately, I found her a list of medications, told them that she was a heart transplant patient, although a neighbor down the street who was an EMT had come up and told him already. And it was just plain frightening. And she was obviously frightened and scared, too, at the moment. We did not know at the time what happened, but she dialed 911 and collapsed.

Ann Gable Allaire:

I don't remember doing that. I don't remember dialing. I just vaguely remember, you know, I had kind of a headache and a back pain in my back and must have gotten worse, just that I passed out. But I don't remember calling 911. So that's interesting. And the only reason they. Well, you know, we have the 911 service now, so they can trace the call, and that's how they knew to come to the house. And they looked in through the window and saw me on the floor. And so that's how they broke in.

Bill Allaire:

In our office? Yeah, in our office. And so by the time I got home, they had just broken in. And fortunately, everybody had had her taken care of.

Dr. Lisa Belisle:

And what you had was really serious and not something that would have been expected for you. You actually had ruptured your aorta. That's a big, big deal. The aorta is the body's largest vessel, and it brings blood up to your brain and to all of your limbs. And it's not something that you would have expected to have happen. You probably would have died, except there was scar tissue from your transplant. So it's kind of an interesting thing that you had something happen to you previously that everybody would have said, oh, that's bad. Then you have something else that happens to you. And at that moment, it was a good thing.

Ann Gable Allaire:

Yes, it saved my life twice. My new heart did.

Bill Allaire:

Yeah, that was amazing. When we brought our Southern Maine med, of course, they just said, where do you want her to go? Because we could have. It was a very stormy, wintry day, February. And I thought, well, let's go to Maine Medical Center. But I said, why don't you call Gilbert Mudge? Dr. Mudge, who's the chief cardiologist at that time, he said, bring her down here immediately. He said, don't even waste your time. So they had to get together a storm team, I guess whatever they call it, the ambulance ride down. And when they saw the X rays, they had to take it down there. Dr. Cooper, who was a world famous cardiologist, said, I don't believe this. I said, I don't think it's ever happened before. He said, I just don't believe this. And he said, your scar tissue has covered your aorta. And he said, otherwise you would have died within five minutes. So he said, we've looked this up. One of the doctors there said, we figure it's about 150 million to one chance that this would ever happen. And I said, holy mackerel. I guess that was my response, was like, wow, there's another obviously enormous God moment. I mean, that was just. If the aorta had burst even an inch higher, he said, wherever. But it burst where the connection was made between the old heart and the new.

Dr. Lisa Belisle:

And all of this, how it was happening in 2011. I think the thing I was most struck by was by that time, your daughter Kate was working at Maine Home Design and People, I think, having read this book, and I shared this with the publisher of the magazine, and he said, I had no idea that this was going on with that family at the time. And it just kind of reminded me two things. One, that you never really know what's going on in someone's life. They can be undergoing something with their family, with their mother, and you just don't know. And then the other is that we went to Kate and Jo's wedding this last summer, and I'm sure that this meant so much more to them, having been through this with the two of you. You know, if my mother had had a heart stop and a transplant and a stem cell transplant and an aortic rupture, you know, my wedding. Not that it wasn't already a good wedding, but I think it would have been so much more meaningful.

Ann Gable Allaire:

Well, it was more meaningful to me as a mother. I consciously, watching Jo and Katie be married, thought, thank you, God, I'm here to see this. I think it's time to write another letter to the donor family. Another letter of thank you.

Dr. Lisa Belisle:

It sounds like there's a lot of lives in that have been positively impacted by whomever it was that donated her heart to you.

Bill Allaire:

Yes, yes. Quite a few people and if it's

Ann Gable Allaire:

the donor, we suspect it may be that particular person whose name we don't know. There were other transplants that day from that person. Eyes somebody, kidneys somewhere, liver somewhere. An incredible gift.

Dr. Lisa Belisle:

I think people should become organ donors if they are spiritually moved to do so. I think they should pay attention to their heart and any symptoms that they have because you never know when strange things could be going on that you don't know the answers to. I also encourage people to get a copy of your book, Miracles Do, A Story of Medical and Spiritual Survival, which I know is available through Amazon. And Ann, tell me you have a website that people can go to to see more of your art. So what is that?

Ann Gable Allaire:

And Gable and Lair Fine Art.

Dr. Lisa Belisle:

Well, I really appreciate your both coming in and talking to us today, and it seems appropriate. This is called Love Maine Radio. So about it's all about love and the heart. And clearly it's not just the actual physical heart that has gotten you as far as it has. It's also the love that has surrounded you from so many different directions. So I feel fortunate to be here talking with you about it.

Bill Allaire:

Thank you.

Ann Gable Allaire:

Thank you for having us.

Bill Allaire:

Thanks for having us.

Ann Gable Allaire:

It's a privilege and joy to share our story.

Bill Allaire:

Yes, it's wonderful to share the story and know our love is still working, too.

Dr. Lisa Belisle:

That's right. Well, very good. We've been speaking with Ann Gable, Allaire and Bill Allaire and congratulations and many more years of love for the both of you.

Ann Gable Allaire:

Thank you.

Bill Allaire:

Thank you so much, Lisa.

Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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, a personal story about how she survived a near fatal heart attack 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 Daw Heffernan:

Thank you.

Dr. Lisa Belisle:

This was a really great book because as a physician, I get to hear people's stories. But it's a snapshot. 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 so what happened afterwards. This is really a treasure for people who are going through something similar.

Deborah Daw Heffernan:

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. So I worked hard to give people a context for what happened to me, because while 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 at in the context of how you lead your life and what else you have going on in your life, what pressures you feel. And I think illness can be a swift sorting 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.

Dr. Lisa Belisle:

And your context was particularly interesting for me because you were a young. Well, you're still a young woman, but you are a younger woman. 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 know, 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.

Deborah Daw Heffernan:

Yeah, imagine that I was very lucky to be in a yoga class, actually, because in yoga, you're very centered in your body, and any yoga teacher worth his or her salt knows that the body does not lie. So 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. So that ended up saving my life, as did my lifelong habit of taking care of my body. Back to context, that whole context of 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 the 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, Cole Wegener's disease, utterly unrelated to what happened to me. But she was the exact same age I was when I had my heart attack, which is 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 a 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. And at the beginning, you've got denial and you've got anger. And so when I got into my angry phase, I blamed everybody, everything, quietly, not lashing out at anyone. But alone in my bed, I would review my life. Whose fault is this? And then the worst fault was looking within and saying, okay, so what did I do wrong? So I had to look at these health habits and say, no, I was doing everything right. So I'd go to my doctor and say to the cardiologist at Mass General who sees me, Mark Summergrand, who's now chief of cardiac transplantation. I said to Mark, okay, so here I was, doing everything right, and it still happened to me. I mean, I could have been a slug lying on a couch, eating potato chips and watching tv, and that would have been more fun than my discipline. And 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. And that really brought Me right up straight. And was yet another motivator for writing this book. Because 1 in 6 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 take a walk every day. It can be squeezed in. You can run up and down the stairs in your office. It can be done. And people can eat properly and cheaply. So 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 through a lifetime of good health 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, 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 a cyclone or something. So for all purposes, this is young women's killer. But I certainly didn't know that in 1980, 1997, when I felt this unbelievable pressure on my chest in my yoga class. But I had happened 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 mountain climbing husband won't go to the hospital. This happens to him. But it happened to me. But what happened to me was this small subset called scads. But 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. So I lived then for nine years with half of a functioning heart, which meant I had half the the day, half the energy. I'd be in bed by two, dead asleep. My husband would have to wake me at four or five. We'd go out for a little walk then. So I kept up that routine, hoping I could avoid the heart transplant. But then in 2006, I had a second scad. My right coronary artery exploded. This time. This time following a nice gentle massage. So Mass General likes to joke that, right, relaxation is not good for me at all, that I should avoid it and stay stressed. Right? So 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 predicted it?

Dr. Lisa Belisle:

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 care 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 an immune system. It's a very real thing.

Deborah Daw Heffernan:

It's a very real thing.

Dr. Lisa Belisle:

And you take medications that cause side effects like weight gain. So it's a commitment.

Deborah Daw Heffernan:

It's an enormous commitment, and you're vetted for that up front. There are psychological and social factors that are taken into consideration in preparation for a transplant. In addition, how dire your need is, where you are on the list, and your chemistry, your infections, your entire health history has to be taken recorded because that very last, it is matched against your potential donor. But 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. But a big part of that is the psychological and the social. Having a strong, loving network really matters. And I didn't quite understand, understand why. I certainly understood the role of my unbelievably devoted husband and my family and all of 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 heart 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 since my very, very sick days. Part of that was just getting me back up to a normal grown woman's weight, because heart disease is debilitating. But also, as you say, it's the drugs. The drugs put weight on, so 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 th thinner because I got so sick, I'm very conscious that I'm hauling weight around all the time. No matter how hard I try to stay slender, it's really all consuming. And I'm aware that that puts 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 an ugly athlete? No. It's because they're healthy and they're blooming with something inside. I try to go for that bloom. The immune suppression is the big challenge in cardiac transplantation. Putting the heart in is a very refined art. Now you can watch it it on YouTube, and it's actually quite beautiful. It's like lowering a lovely balloon into the chest cavity. It's quite a remarkable thing to watch if you have the stomach for it. But I was curious. I wanted to see what happened to me so 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. And so 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 am ecstatic. I feel like the little kid who goes to her first preschool and experiences her first roll call. And people say, you know, and Deborah Daw Heffernan, are you there? And I'm like, yes, I'm here. Yay, I'm here. You know, 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. But the other side of it is, and I will put it as Mark Summer grand 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, not that we will put you back to Deborah in the yoga class before she moved into reclining Marichi asana and felt her heart explode. That Deborah's body is gone. And 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 are simply exchanging them for another set. It's an exchange. And having that in my head has helped me me through the immune suppression exchange, because I emerged from my heart transplant ecstatic to be here and have to be careful. So there's that joy, unbridled joy, you cannot 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've only recently started hugging my older grandsons who are like 17 and 18. And to feel their big arms around me, man, do I love it. Because they're of an age where they understand that 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. And the other side's effect of immunosuppression is cancers. And so, yes, I already have a cancer starting. It's being watched. And if it 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. And I think back to my friends who have gone through 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 about. Talking, 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 spot 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 it, I'm forgetting what the name is, but you have to look at it 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. And that's what I stick with. I don't look at the data, but I have been very ill. The first five years I was non stop 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.

Dr. Lisa Belisle:

when can we look forward to your next book?

Deborah Daw Heffernan:

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 hour 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. And that's been occupying a good deal of my time for the last few months. So I have to get back to

Dr. Lisa Belisle:

perfect spring Stranger so what is your website?

Deborah Daw Heffernan:

It's just my name, debradahl heffernan.com.

Dr. Lisa Belisle:

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, 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. So you have a great view of the world. And I appreciate your coming on the show and talking with us.

Deborah Daw Heffernan:

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 the 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 Mark Semogrand 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 experienced the fullness of life's meaning at such a young age when I can, I hope, have an impact on others through my books to help them give some deep thinking to how they're spending these precious lives. And 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. So if anyone is so inclined to buy my book, and I hope they will, it's all going back to, to research. So my feeling is if you buy a book, you save a life.

Dr. Lisa Belisle:

Deborah, it's really, it's a pleasure and I hope people will buy your book An Arrow through the Heart and I hope that they will go to your website. You've been speaking with Deborah Daw Heffernan and I hope you'll continue to use that wonderful new heart of yours and that ongoing body of yours to continue to bring joy to the world. Thank you.

Deborah Daw Heffernan:

Thanks, Lisa. And thank you for bringing joy to the world.

Dr. Lisa Belisle:

You have been listening to Love Maine radio show number 182, Women of Heart. For a preview of each week's share, sign up for our E. Follow me on Twitter and see my running travel, food and wellness photos as bountiful1 on Instagram. We love to hear from you, so please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows. Also let our sponsors know that you have heard about them here. We are privileged that they enable us to bring Love Maine Radio to you each week. 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 and Meg LePage, both of whom balance busy professional lives with athletic endeavors. Thank you for allowing me to be a part of your day. May you have a bountiful life.