Q & A with Author Jeremy Whitehead:New Book Profiles a Spouse’s Account of SCA

Tell us about what happened to Carolyn the day of her SCA. My wife Carolyn and I had recently married and had moved from Australia to Boston, where at the time she was working for IBM. She had a business trip in Dallas shortly after we were married. During her trip, I received a phone call from her boss saying she ‘had had a bit of a turn’ and that they had sent her off to the hospital — he was understating things severely. What had happened is that while at her business conference, after just having introduced herself to everyone in the room and sitting down, she collapsed to the ground. Luckily, two male colleagues helped her immediately as well as a nurse attending the conference center. It took the EMTs about 19 minutes to bring Carolyn back. They then took her to the ER, where she crashed again. I arrived hours later — IBM flew me to Dallas. All the hospital could tell me was that she had been admitted for cardiac arrest but they weren’t sure if she had maybe suffered an aneurysm. This terrified me. Later they found that it wasn’t an aneurysm that caused her to collapse, so they also sent her for an angiogram, which came back clear. After this the doctors figured it was an electrical problem with her heart, so they sent her to the electrophysiology lab. She spent a couple of hours in the EP lab, and although they couldn’t locate the problem, they also said they couldn’t release her from the hospital unless she was implanted with an ICD. During the time that she was in intensive care, I was asking a lot of questions — I felt powerless. I describe a lot of this in the book — it’s really what the whole book is about. One of the things I noticed is that the physicians approached cases such as Carolyn’s from a very clinical and scientific point of view, while the nurses were much more attuned to the patients and family; for instance, the nurses were talking to Carolyn as though she was fully awake, even though she could not see or talk. In addition, the doctors would talk about her as being in a coma, while the nurses talked about her simply being sedated, which is much easier to hear during such a traumatic time. Therefore, I would ask the nurses lots of questions, such as why are you sedating her and why is she intubated? I had also been watching the monitor and saw her breathing at 17 respirations per minute, and yet the machine was set on 12 breaths, so the extra 5 were coming from her. Eventually they agreed to extubate her. I must say that dealing with the insurance companies was also quite a funny experience, since I had never heard of an HMO or PCPs before in my life! Did Carolyn receive an ICD? What was that experience like? Because of the CPR, she had some pneumonia; she had also received so many IVs that her arms were really taking a beating, and in the ICU they suggested a central line, but that now had to be removed and so there was a bit of a delay there. Ultimately they didn’t put the ICD in until the following week. Carolyn wasn’t happy about having the ICD implanted; in fact, she wasn’t happy about any of this. She is a fairly strong-willed woman, and once she was no longer in critical condition and her vitals were stable, they moved her to a cardiac recovery ward, where she argued that she didn’t need to have an angiogram, which was a bit of a problem for us! In the end she agreed and, of course, when it came out clear she said, “See, I told you, I didn’t need one.” She was worried about the dangers of catheterization and so forth. The doctors had said that she had had a heart attack, but she hadn’t; they also said she had suffered an aneurysm but she hadn’t, and now they were saying she had an electrical problem. So we questioned the doctors about it since we had only come so far with theories, and we were trying to understand what was going on. I asked them what happens after an EP study, a term which meant nothing to me, and they said she would have a device implanted. I did a doubletake and said “whoa — you haven’t known what it was up until now, and suddenly you’re telling me you’re going to put in a device?” The physician explained it was a prophylactic measure. This was a huge shock for Carolyn and me — this idea of implanting a device when we didn’t yet know what her diagnosis was and yet it was purely for protection just didn’t make sense. The ICD was a permanent thing, and as we’ve learned, it changes your life dramatically. It was a big shock, and the doctors understood that, so we had the weekend to talk about it. I think it also may be very difficult for physicians to explain the need for ICDs, so they discuss statistics; for example, we were told that the likelihood of this happening again was about 30% in 2 years. They said that if an arrest were to happen again that she’d most likely die. So there really is no way one can rationally say “I won’t have a device, let’s think about it and go home.” I think we were lucky in that we had the weekend to consider it. The ICD was implanted on Monday, and on Tuesday Carolyn was released from the hospital, so we headed back home to Boston. How is Carolyn doing today? How is she coping with the ICD? The biggest problem with her having an ICD is the psychological aspect. Carolyn to this day still cannot fully emotionally accept the fact that she needs this device or that she may have another event, and that nobody can say why. It is a terrifying thing. In addition, every time we move we now have an extra item on our house checklist, which is to find a new electrophysiologist. This is going to continue for the rest of her life — she will have maybe another 5 or 10 replacement devices, but hopefully during that time the ICDs will become a lot smaller and more advanced. Has she had any episodes since? No, and that is the really exciting or maybe the truly disappointing news, since Carolyn likes to think that there wasn’t anything wrong with her in the first place. Previously she had had a benign arrhythmia detected; she often would have a couple hundred PVCs and/or palpitations during the day that she thought were terrible, but a cardiologist had explained to her that the number of PVCs was insignificant. The official diagnosis of her SCA was idiopathic ventricular fibrillation, but they suggested that it could have been an “R on T event”, basically a PVC happening at the wrong time. However, there is no evidence to support that theory, and I have heard conflicting evidence that this is not possible. So far the only thing the device has caught was about 10 beats of ventricular tachycardia (VT) one night. We don’t know why she went into those 10 beats of VT — it would have been nice to know. Because an ICD doesn’t continually store the heart rhythm, they only caught the event after it had started charging. One of the chapters is titled “Miracles”. Tell us about this chapter. The “Miracles” chapter is really about seeking the reason she survived. We had difficulty trying to understand if it was a miracle. Very few people survive sudden cardiac arrest, usually because they do not have an AED nearby. However, Carolyn did survive, and we are still trying to understand why. Therefore, this chapter discusses a lot of what it takes to survive; for example, centuries ago bringing back the dead required divine intervention! It then goes on to describe the miracle that there were bystanders nearby willing and able to help Carolyn at the time she collapsed. Perhaps it was also a miracle that the nurse, Kathy Williams, heard the commotion and went to assist with the correct CPR technique. Certainly it was a miracle that Carolyn’s arrest occurred when there were people nearby and not when she was alone or walking down an empty corridor. There was also a top-ranking hospital only five minutes away. Most importantly, it was a miracle that she didn’t suffer any brain damage, even though she was down for 30 minutes without a pulse. Miracles may explain why she survived, but we know that the real “miracles” were the actions taken by others. How soon afterwards did you start writing the book? After the event happened in 2002, I acted as chauffeur for Carolyn — she went back to work within a few weeks, but couldn’t drive for 6 months because of the ICD, and I was waiting for my green card. She was insistent on going back to work, and since she could hardly stay awake for a full day anyway, she started off with half days. That took us into 2003. I got involved with a startup and did that for about a year, but after looking at the market and at what I was doing, I decided to change careers and switch to writing. We had many people tell us they thought Carolyn’s story was so remarkable, and a friend of ours had pointed us to a book called An Arrow Through the Heart written by a woman in Boston who had a coronary artery burst. We read the book, and were touched by her story about an airplane trip where she just happened to sit next to a cardiologist. She had told him her story, and he said that she absolutely had to write this book because he himself had suffered some cardiac difficulty and was totally unprepared for what occurred — yet he was a physician dealing with these cases every day! So Carolyn and I agreed that I should write her story in a book, but from the perspective of the spouse, not the victim. It had been a terrifying event for me, as well as her family. My dedication says it all: “For Carolyn, she missed so much and yet she endured it all.” I started the book in 2004 and did a lot of research. Carolyn and I had already done a lot of Internet-based research on SCA after her event to try and understand as much as we could. We found communities such as ICD clinics, information about electrophysiologists, and other discussion boards from patients. Then just as I was writing the final draft, Carolyn announced that we were moving to New York, so there was another hiatus. However, it was quite good to have that change — being able to put the book manuscript away and then pick it up later was very valuable because I rewrote a lot of it. I managed to finish the book and it was published this year. Are you or Carolyn involved with any research or patient support organizations now? Yes, I write for the Sudden Cardiac Arrest Foundation (www.sca-aware.org) — I work with survivors and write their stories, as well as other articles. Carolyn and I have also been involved with the American Heart Association; we were instrumental in 2004 in lobbying Congress to expand the Medicare/CMS reimbursement for ICDs. Another time we participated in “Go Red for Women” campaign — 600 of us, all dressed in red, descended upon Capitol Hill on behalf of NIH funding advocacy. I also speak at ICD support groups and participate in SCA Foundation events. What tips or advice do you have for patients and their families going through this? What information can people take away from this book? The easy answer is: ask a lot of questions and don’t be afraid of what you are going to hear. You also need to read and seek out the information; I read all the pamphlets and brochures of information that I was given in the EP ward, because I wanted to understand what this was all about. I hit the Web and checked out sites by manufacturers and other support sites. One of the things I write in my book is that knowledge is very valuable, so when you are faced with something new and difficult, you can apply knowledge from another area to make it easier to deal with. It is no good to deny — you have to go out and seek the information you need — you’ll feel better and there won’t be that element of the unknown. It is important to note that at the ICD support groups we’ve attended, the new people who tell their stories are different from those people who have been in the group for months — they have a different demeanor. I noticed that all the new attendees wanted to know what it felt like when the device went off — this is the question that is always asked. As patients discussed their experiences, I would see the newer participants relax a bit, while the returning attendees faced a new fear of “Is it going to go off again?” My point is that you are going to face fear. Burying the fear won’t work. My book is directed at all SCA survivors and their families, because there are hundreds of thousands of people going through this but less than 10 percent survive. It’s interesting to note that all the survivors I’ve interviewed have a common theme — they had an SCA event, it was witnessed, someone started CPR and they were brought back to life by an AED. What advice do you have for electrophysiologists and staff? I was very surprised when we came to New York that Carolyn’s physician did not have a patient support group. I think every electrophysiologist should have a support group for both new and old patients, to meet regularly to talk and get professional psychological advice. The important thing is to get a community of patients talking to one another — that is one of the things we're doing at the Sudden Cardiac Arrest Foundation. We have a national registry database for all SCA survivors so they can communicate. Personally I think the EPs themselves can sometimes be too clinical in their prognosis, and ICD patients need more than medicine. They need to understand that they have a device that absolutely will not stop — it is guaranteed that if it detects a dangerous arrhythmia it will zap them — that is what it is designed to do. It doesn’t matter how much medicine you talk about or the lethality of the arrhythmia, this device is basically designed to shock someone, and that has to be dealt with. I’m relatively critical of the physicians in my book, not from a perspective of incompetence, but from the perspective of what the cardiologist on the airplane said, “I do this every day, and I had no idea what it was like.” Maybe every EP should have an ICD implanted! What’s next for you? I’ve been talking with Carolyn about that. My long-term goal has always been to be a writer, and I’ve recognized that this particular topic of sudden cardiac arrest has grabbed me and offers a way of giving back to the community. I’m doing freelance work right now, and as long as Carolyn supports me in this, we’ll see where it leads, and then I might start branching out into different areas. But for right now I am very interested in working with the Foundation and interviewing survivors and writing articles. So in a sense, cardiac arrest has taken over my life! For more information, please visit: www.heart2good.com