Transcription of Anne and William Allaire for the show Women of Heart #182
Lisa: This is Dr. Lisa Belisle and you are listening to Love Maine Radio, show #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 some unexpected heart trouble at relatively young ages. Their diseases were so severe that they required heart transplants. You will be surprised and inspired by our conversations with artist Anne Gable Allaire and her husband, Bill, and Deborah Daw Heffernan, author of “An Arrow 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 Anne 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 transplant within less than a year of each other. Her husband, Bill Allaire, recently penned a book about that experience called “Miracles Do Happen: A Story of Medical and Spiritual Survival.”
Thanks so much for being here and congratulations on being here for both of you.
Anne: Thank you for inviting us.
Bill: It’s nice to be here.
Lisa: This is quite a story. 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 year ago. It was very dramatic the way that this all happened from reading Bill’s book.
You were at work one day. You’re 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? Maybe Bill can, because I guess, it’s between the two of you that you’ve sort of pieced it together.
Anne: I’ll let Bill begin.
Bill: That incident occurred because he was late for an work … 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 coffee room, and found Anne on the floor. He couldn’t revive her. They had to call local EMTs and they came up and had a defibrillator to get her heart going. That was the incident.
Yes, her boss was there. Thank God. The only person in the building besides her at that time, so if he had left, she wouldn’t be here today or I wouldn’t have to write the book, I guess.
Lisa: Your heart, it completely stopped.
Anne: Uh-huh [affirmative], that’s what I heard.
Lisa: 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.
Anne: I had some episodes of feeling faint and passing out, and actually, I’ve been evaluated by a local cardiologist who said, “Oh, you’re fine” after the passing out incident. He said, “Your heart, well, it’s a little thick, but some athletes have that.” Since I’ve been running and was in a really good shape, I thought, “Oh, I must be very athletic.
There was indication that something was off, but nobody knew or we couldn’t figure it out. This passing out was a definitive moment, because then, I had to really … We had to find some more answers.
Bill: She 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 a victim of domestic abuse, but she was okay when we brought her to the doctor’s office.
Anne: The snow hitting, the hard cold snow was what brought me out of it that time.
Bill: Yeah, and then, she passed out again in May in our home. I heard a thump upstairs. I 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.
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. That was during the ’97 [inaudible 00:06:31].
Her evaluation before that had been by Dr. [inaudible 00:06:34]. She wasn’t feel well once in a while and he said, “You know, well, apparently, that’s just due to a, you know, your athletic heart.” Now, we know it was because of amyloid.
Lisa: Talk about that. That’s an interesting disease that not everybody knows about.
Bill: There’s primary and secondary. Secondary is inherited. Anne 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. It could be your eyes. It could be your liver. It could be your heart. It could-
Anne: Not your eyes with that one.
Bill: I’m sorry. That’s true. Secondary is where it affects the eyes. Anyway, what it does is protein begins to attach itself to that organ, whichever organ it happens to be, and what it does 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’ll just think or you feel 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. Most doctors won’t think to do it.
Anne: If I can interrupt, you’re the … At 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 need to go see a psychiatrist. I think at that time, it was particularly difficult to trace down a diagnosis. I think that’s changed. Now, there is more awareness of it anyway.
Bill: 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 Anne, who just happened to be on the floor and didn’t even know she was in the hospital that day, and walked by us said, “Anne, what are you doing here?” That’s in the book.
He said, “You know, it sounds like something I studied at BU. Let me check with your cardiologist.” Sure enough, the tested for amyloid and of course, that’s where we [inaudible 00:08:57] Southern Maine Health Care. They could not treat it there. I mean, the only place to treat it was in Boston, anyway, so we were very, very fortunate that we ran into him.
She was going down to have her pacemaker installed when he ran into us. He said, “The pacemaker, you’re probably going to have to have, anyway.” 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 condition we didn’t even know what you’re getting it for.
Lisa: You’ve collapse, your heart stopped. They revived you. They’ve got you to Southern Maine Medical Center. You learned you had to have a pacemaker. Then, all of a sudden, you have this much bigger disease and it’s about a transplant. You’re actually going to need more than just something to restart your heart if it stops. You’re going to need to have your entire heart taken out of your chest and replaced with someone else’s.
Bill: Yes.
Lisa: That must have been quite a shock.
Bill: Yeah.
Anne: Possibly. We had to be evaluated first to make sure that was the right road. 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.
Yeah, it was a process. It was a shock, and yet, there was some relief knowing that there was something that you can do. Just the not knowing is oftentimes worse than knowing what you’re dealing with, I believe.
Bill: 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 our problem yet. We still have no idea.
When we went down there, Dr. Falk who was the amyloid cardiologist at Boston University Medical Center, put us through some testing. He said, “Your heart is going to need a … 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.”
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.
Anne: Let me interject that Dr. Martha Skinner who was, that time, the head of the Amyloid Research Department. I met with her. We met with her, and I will never forget sitting on this side of her desk and she said, “Oh, here’s your treatment plan.” 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 across to me, and I said … I thought, “Oh, okay. I can do that.” Because when somebody wrote it down for me, and so this … And she was very kind and very wise, and I trusted her, and so I ” All right, okay.”
Bill: She’s a wonderful white-haired lady. You’d love to have her as your aunt or whatever, grandmother, as long as she is so wonderful, very soft spoken and very, very smart lady obviously.
Lisa: 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. You’ve already referred to one of this God moment that you’ve called it, where your boss was late for an appointment, and then he happen 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 is 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. You were really relying on your community to make this all happen.
Bill: We were relying on the God of our higher power and God of our understanding, anyway, to help us somehow, and that was the spirituality of it. Of course, the spiritual part for me was overcoming the desire to drink. I was an alcoholic. I am an alcoholic. 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. We’ve just been married for a year and a half. We’ve been together for the past seven years. We’ve just been married a year and a half.
That was very frightening and I do remember in the book writing about, when I … Which actually happened. I remember yelling, “Please, God, help me,” as I drove by Cappy’s Liquor Store, leaving Boston. I said the Serenity Prayer, I just kept going, and about a mile later, I think, I smiled, thanked God I did that.
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. She said, “What are we going to do with the house? What are we going to do [inaudible 00:14:21] out there?” I plan to sell the house perhaps, maybe work also, and I … I was definitely planning to work, but fortunately, our community came behind us and really helped us a lot, so I didn’t have to work and we didn’t have to worry about the money angle.
Anne: I think that that turning it over was important. I felt, personally, I was at a point where, “What else could I do>?” We always have choices, but that was what I chose. Our friends, we didn’t even know that help was out there until they came forward, so part of the growth in this was learning to receive instead of always being the one helping others.
That feels better, that feels more empowering, but it’s difficult to let yourself be vulnerable enough tor receive help, and we did. It was a net spirit that we accepted it, because we know it wasn’t of our making. We didn’t go looking for it. We didn’t ask to raise funds. They just did it. They did for us what we can do for ourselves.
Bill: Exactly, and I can remember thinking of myself as a man. I’m supposed to be in charge here. I’m supposed to be … I supposed to … I should figure out this and have the money available and I should have … should, should, should. All the shoulds in your life can go out the window.
I did this time because I could have recognized that once I step back and let the people who want to help us help us, then I could be with Anne and be her spiritual and moral support rather than someone who’s always running around in his head trying to figure out how to do this and that.
Things came together much easier that way once I let go of being the man responsible, and that’s an issue that, fortunately, Anne and I, 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. I’m not cured. I still try to control this, I could try to control that, but basically, in this situation, I realized finally, while we are still [inaudible 00:16:32], thank goodness, that I could step back step back and let friends come in and do what they want to do to help us, and they did.
Anne: We needed to do our part, too, and that is being advocates for … I had to be an advocate for my own well-being and healthcare, and Bill was there doing the same for me, for us. 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 just because.
Bill: Yeah, it was very frightening for quite a long time. I guess that’s a good word to use. 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. Even the call I got from our friend when I was home, as I said, before we left from BU telling me they were starting up a fundraising committee.
I thought, “Well…” I wasn’t aware that they’re going to come up with the amount of money they did. I was thinking smaller amounts would help us out a little bit. It was redemptive, I guess.
Anne: 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 were so much … I don’t know how many. They did all kinds of records that [crosstalk 00:18:08].
Bill: They usually gather most 40 or 50. That’s a good drive to let [inaudible 00:18:08]. The people lined up at the Kennebunk High School gymnasium to get in.
Anne: You often see or hear about disasters or things or people are in need and the community rises to the occasion, that’s so wonderful just to see that happen.
Lisa: They continued to support you when you went out to get your heart transplant when you’re at Mayo, and you were there for quite a while.
Bill: Five and a half months.
Lisa: That’s a process.
Anne: It is, and we left our home to go to BU where I could be evaluated. 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. Then, we flew right to the Mayo Clinic, so I felt a little bit like we’ve been recalled because I was … How many month later did we come home?
Bill: It was January 15th and we left August 1st, so, it was quite an ordeal. Rip Van Winkle, I guess so. 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 Anne has, at best, six months to live.” We didn’t realize how advanced the disease had gotten until I heard that.
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Lisa: Describe the process of waiting for this new heart knowing that in order for you to get a new heart, somebody else’s life would end up, no longer existing.
Bill: That was the worst-
Anne: That’s the worst part.
Bill: Yeah, that was the worst part.
Anne: 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. It’s such a gift. I don’t know the family. I wrote to them, after I was home finally that February, a letter of gratitude. I had to send it to a cleary house where they keep them, and then, the family is asked if they want to read it, and they weren’t ready. I don’t know if they’ve ever read it. It matters, but it doesn’t really matter because I have so much gratitude and we pray for them everyday. I do.
Bill: There were friend 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 doctors did mentions it was a young heart, that that may have been the heart that was given to us, given to Anne.
That just brought tears to her eyes at that time, and mine, too, thinking that some young girl, that [would 00:23:09] give her … had fortunately been an organ donor, but her parents maybe … 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 a daughter’s heart to my wife. That was a big deal when we heard that. 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’re very pleased about.
Anne: There was one time just before that, this 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, so it didn’t go through. Even then, we thought, “Well, it must not have been the right one.”
Bill: In all of those 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 then, finally, that word came. Even then, it was midnight and we’re still waiting until they pulled the gurney up.
Anne: 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, and-
Bill: I was wound up like a drunk. She’s [inaudible 00:24:39]. She’s getting a new heart. I’m going crazy.
Lisa: 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? Is there anything for your that is coming across differently artistically or otherwise with this new heart?
Anne: No, I think I’ve grown and my work has matured probably because of the experience, but I don’t think it’s like the stories you hear that somebody suddenly craves french fries that they never did before, something like that. I’m always aware everyday what a gift it is and that’s life-changing, so yes, it’s probably affected my work in that way on the spiritual level. It affected my work and that I’m here to do it.
Bill: 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 that was 17 years out, we’ve just had her evaluation and she came through with flying colors. This is 17 years later.
Lisa: Yet, things weren’t all done 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. Describe that for me.
Bill: I was downtown in a meeting. I heard the sirens just before them meeting, and then, went outside and was talking to somebody. It didn’t arouse any worry because we live near the turnpike and they always have the ambulance and the police cars go by for accidents that are on the turnpike.
I didn’t think anything happened until I was driving home, going down Fletcher Street, realizing that there was a police car I had to pullover for, and as I turned the corner near the high school, I suddenly realized that police car was going down my street. I’m thinking, “Oh, my God. I wonder which neighbor is having a problem.” I got to my house and I was just terrified, just plain terrified.
I just saw all of a sudden, two ambulances, three police cruises, and they already broken in the door because I wasn’t home yet, and they found her on the floor, again, comatose, I guess, lifeless anyway in many ways, but then they woke her up. She was screaming. They got her on the gurney and out into the ambulance, and on our way.
I had to watch this, and fortunately, I found her list of medications, told them that she was heart-transplant patient, although a neighbor down the street who was [Niam Pete 00:27:51], come up and told them already. It was just plain frightening. 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.
Anne: I don’t remember doing that. I don’t remember dialing. I just vaguely … I had kind of a headache and pain in my back, and it must have gotten worse just that I passed out, but I don’t remember calling 911. That’s interesting.
We have the 911 service now so they can trace the call, and that’s how they knew to come to the house. They looked in through the window and saw me on the floor, and so that’s why they broke in.
Bill: In our office, yeah. That time I got home, they had just broken in. Fortunately, everybody [inaudible 00:28:39].
Lisa: What you have was really serious and not something that would have been expected for you. You actually had ruptured your aorta. That’s a big deal. The aorta is the body’s largest vessel and it brings blood up to your brain and to all of your limbs. It’s not something that you would have expected to have happened. You probably would have died, except there was scar tissue from your transplant. It’s kind of an interesting thing that you had something happened 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.
Anne: Yes, it saved my life twice. My new heart did.
Bill: Yeah, that was amazing. When we brought her, I saw the [inaudible 00:29:25] they just said, “Where do you want her to go?” because it was a very stormy, wintery day, February. I thought, “Well, let’s go to Maine Medical Center,” but I said, “Why don’t you call Gilbert Mudge?” Dr. Mudge, who was the chief cardiologist at that time. He said, “Bring her down here immediately.” He said, “Don’t even wait [inaudible 00:29:45].”
They have to get the other storm team, I guess, whatever they call it. The ambulance ride down and when they saw the x-rays, they had to take her down there. Dr. Cooper who was a world-famous cardiologist said, “I don’t believe this. I don’t think it’s ever happened before.” He said, “I just don’t believe this.” He said, “Your scar tissue has covered your aorta,” and he said, “otherwise, you would have died within five minutes.” He said, “You’re a …” We looked this up.
One of the doctors there had said, “We figure it’s about 150 million to one chance that this would ever happen.” I said, “Holy [inaudible 00:30:18],” because that was my response. [inaudible 00:30:20]. There’s another obviously enormous God moment. “If the aorta had burst even and inch higher,” he said, whatever, but it burst where the connection was made between the old heart and the new.
Lisa: All of this that 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 share this with the publisher of the magazine, and he said, “I had no idea that this was going on with that family at that time.”
It just kind of reminded me of 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 family, and you just don’t know. The other is that we went to Kate and Joe’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.
If my mother had a heart stop at a transplant and a stem cell transplant, and an aortic rupture, my wedding, not that it wasn’t already a good wedding, but I think it would have been so much more meaningful.
Anne: It was more meaningful to me as a mother. I was consciously watching Joe and Kay be married, but 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.
Lisa: It sounds like there’s a lot of lives that have been positively impacted by whomever it was that donated her heart to you.
Bill: Yes, quite a few people.
Anne: If it’s the donor we suspected maybe that particular person, personally we don’t know, there were other transplants that day from that person. Eyes, somebody; kidney, somewhere, and liver, somewhere. An incredible gift.
Lisa: 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, Bill, get a copy of your book, “Miracles Do Happen: A Story of Medical and Spiritual Survival,” which I know is available through Amazon. Anne, tell me, you have a website that people can go to to see more of your arts. What is that?
Anne: Anne Gable Allaire Fine Art.
Lisa: I really appreciate your both coming in and talking to us to day. It seems appropriate. This is called Love Maine Radio, so it’s all about love and the heart, and fairly, it’s not just the actual physical heart that has gotten to you as far as it has, it’s also the love that has surrounded you from so many different directions. I feel fortunate to be here talking with you about it.
Anne: Thank you for having us.
Bill: Thanks for having us.
Anne: It’s been a privilege and enjoyed the show, our story.
Bill: Yes, that’s wonderful to share the story and know our love is still working, too.
Anne: That’s right.
Lisa: [Fairly good 00:33:29]. We’ve been speaking with Anne Gable Allaire and Bill Allaire. Congratulations and many more years of love for the both of you.
Anne: Thank you.
Bill: Thank you so much, Lisa.