Patient Perspectives: Finding the Humor in Every Situation

Interview by Jodie Elrod
Interview by Jodie Elrod
In this feature interview, we speak with Tracey Conway, an Emmy-Award-winning actress and comedienne who experienced sudden cardiac arrest (SCA) in 1995. Since that time she has used her comedic talents to give presentations on heart health around the country. Read more about Tracey’s amazing story here. Tell us about the day you experienced sudden cardiac arrest. Where were you at the time? What I can tell you is a compilation of a dozen or so witnesses’ input, since I have no memory at all of about five days surrounding my cardiac arrest. It took place at around 10 p.m. on a Saturday night. It was very much business-as-usual, which meant I was at work in the television studio on the set of our Seattle-based sketch comedy show, the subsequently ironically titled Almost Live! We had just completed taping our half-hour show; the cameras stopped and our host asked the audience if they had questions for us while our director did a technical check. At this point, apparently I turned to another actor and whispered, “I don’t feel too…” and then collapsed. In a bizarre coincidence, on that night’s show we had spoofed the TV drama ER, so the audience simply assumed my sudden, dramatic ‘faint’ was an extension of the comedy sketch: “Wow, good stunt fall! She didn’t even flinch.” Though my fellow actors knew this wasn’t part of the script, it still took a few moments for them to realize I was in very serious trouble. Only when my coloring became grayish, my eyes rolled back in my head and I began to emit a strangled gasping sound — agonal breathing, literally my dying breaths — did anyone realize this was not your typical swoon. In fact, I was clinically dead, but they didn’t know that until a young man from the audience who was a volunteer firefighter came forward and determined I wasn’t breathing and had no pulse. When he shouted to call 911, numerous people grabbed phones to summon help and the chain of survival response began in earnest. When did it happen? Thirteen years ago, last January 21st, 1995. Was there a defibrillator nearby or did an ambulance arrive? In 1995 defibrillators were not available for lay person/non-healthcare work sites, so my resuscitation initially relied entirely on vigorous bystander CPR from a young volunteer firefighter. In response to the 911 call, the first responders were ‘truck-and-ladder’ firefighters who arrived with a defibrillator. They took over CPR, intubated my airway, and after determining I was in ventricular fibrillation (VF), delivered my first two therapy shocks. During this, our audience of 120 was rapidly escorted from the studio, no doubt somewhat traumatized themselves. The medics arrived shortly after and continued to shock me, along with intravenous epinephrine and more CPR, until the sixth defibrillation successfully converted me out of VF, almost 20 minutes after my initial collapse. Once they were satisfied that my heart rhythm had sufficiently stabilized, I was transferred by the medic van to our Level I trauma hospital, Harborview Medical Center. I remained there for four days in intensive care, receiving an angiogram as well as numerous other tests, and then was transferred to the University of Washington, where I came under the care of an EP team for the implantation of my ICD. You were so young to have experienced SCA. Had there been any family history of heart problems? Yes, SCA from ventricular fibrillation at age 38 seems young for a person who was a non-smoker and who participated in vigorous regular exercise. However, as the EP community knows only too well, VF strikes people regardless of age or level of fitness. After running a battery of tests, my SCA was ultimately deemed idiopathic. As for our family history, out of four siblings, my older brother and I had been diagnosed with irregular heartbeats and mitral valve prolapse, and both were prescribed beta-blocker drug therapy. I believe I was more consistent taking my meds than my brother, and I had been on the drug for 14 years at the time of my SCA. Interestingly enough, neither of our parents suffered from heart disease. Apparently, it was the combination of their genes that brought it forth in their two children. Looking back with 20/20 hindsight, I recall a couple of times I briefly passed out, likely due to my arrhythmia limiting the oxygen to my brain, but in each case my heartbeat reverted to a normal rhythm. This was not the case in January of 1995, though. How has your life changed since the SCA? My life has changed immensely. Though I completed four more seasons of my television show, it was during this period that I began to share my story of surviving SCA and the prevalence of heart disease caused by dangerous arrhythmias with an ever-widening audience, starting locally in the Pacific Northwest and expanding as far as Norway and Budapest. By the time our comedy series ended its 15-year run, I had switched from sketch comedy performances to a one-woman ‘info-tainment’ presentation to educate and inspire people to love, respect and protect their hearts and recognize the symptoms of cardiac disease. Who knows what I would be doing now if I hadn’t dropped dead? It has given me a whole new career! Of course, Almost Live! clips continue to live on via YouTube. Did you receive an ICD? What lifestyle changes did you have to make? I feel extremely fortunate that other than implant surgeries for my original and subsequent ICDs (I’m on my fourth at this point), I have had minimal lifestyle changes to adapt to my chronic arrhythmia. Because I was an otherwise very healthy adult when I went into VF, my heart tissue was not damaged, even though I was ‘gone’ for at least 15 minutes. The ICD device implantation was the first surgery of my life, and that experience and recovery was probably the most traumatic. As is common, I lost about five days of memory surrounding my SCA, so although my family and friends have emotional stories of those frightening days, they are completely blank to me. As for lifestyle changes, going through airport security will never be the same again! I’ve developed a friendly little patter for the process of the pat-down screening: I simply consider it a mini-massage and request double squeezes when they examine my feet for potentially threatening materials — I love foot rubs! As a single woman, not being allowed to drive for months following my SCA was probably the toughest lifestyle adjustment. Nowadays, my biggest concern is that each surgery to replace the device generator always involves risk, plus I tend to develop aggressive scar tissue. My vanity is sometimes also wounded when coping with the keloid marring of my skin from the incisions. However, ‘gummy worm’ skin is a small price to pay when I consider my ICD to be the equivalent of having paramedics with me 24/7. What have been your methods for coping? I laugh! A lot. It's great for the cardiovascular system, the stomach muscles and the spirit. I look for the humor in every situation, even the tough ones, and find that a smile or chuckle is often the best lubricant in easing all relationships. The occasional cry is good too, though big sob-fests were more therapeutic in the first few weeks after my SCA. In the beginning, I relied on my family and friends to be healthcare advocates when I was frightened, unprepared, brain-fogged from meds and overwhelmed by the suddenness and the seriousness of my situation. Between them and me, many questions were asked of my caregiver team throughout that first year, often several times. Other coping advice: especially in the early weeks of SCA recovery, don’t hesitate to ask for assistance or support from a wide circle of people. People really want to help, but often aren’t sure what to do until they are asked. Often it can be a little thing: “Would you pick up a DVD of Young Frankenstein for me?” (Back to that laughing thing! Really, do you need another carb-and-fat loaded casserole? I doubt you have room in the refrigerator.) Also, let them know it is okay to say ‘no’ and that you will ask again. The wider the net you cast, the more likely you are to have multiple offers of aid when you really need it. When I broke my ankle last year, I sent a mass email (BCC) to all my friends listing days and times I needed rides to appointments, and requests for laundry help since I couldn’t go down to my washing machine in the basement. I got responses from 90% because I had offered several options at several times. Plus, I had a couple of pals who said to just put them on the back-up list in case someone had to cancel. Another way to help adjust: being educated and staying as current as possible with the new therapies being offered helps me feel more in control of my situation. There are many legitimate websites out there to learn about what is happening in heart disease research, but it helps to ask your EP team which ones they feel are the best. After reading the emotional outpourings of many recent SCA survivors on various websites and blogs, my heart truly aches for them. I want to emphasize, “Hang in there, be gentle with yourself, and keep on sticking to your recovery plan. It really does get better and you are so much better off having an ICD than not!” Many patients feel guilt for surviving since the vast majority do not make it. Others are angry that SCA happened to them completely out of nowhere, and it is now impacting their lives in ways they don’t want to face. I never went to the “Why me?” place regarding my own SCA experience. I always felt, “Why not me?!”: something is going to get all of us, eventually. That is not to say I was never frightened that my life might end far too prematurely. My very first night alone after my SCA in 1995 was pretty shaky. I am ever grateful to my now-departed Siberian Husky dog, who toughed out that first solo night with me. As long as we’re on that topic, a big coping aid is having an animal companion. They are patient, don’t care how your disease changes your appearance, are nonjudgmental, help take your mind off of yourself, and when your body is ready for it, are a fantastic incentive to get out and exercise. Sometimes it is easier to pour out your emotions to an animal. What made you decide to become a keynote speaker on this topic and share your story with others? Who are the presentations geared towards? Corny as it sounds, I did not choose to become a speaker on the Cardiac Care Circuit as much as it chose me. Due to my minor celebrity status in Seattle from our television show, articles on my SCA story were featured in regional papers, and soon afterwards my phone started ringing with requests from hospitals, emergency care and non-profit heart groups requesting me to share my experience. My “Drop Dead Gorgeous!” presentation grew out of that and is still my most sought-after talk. In it I share the details of my SCA and the factors that contributed to my heart disease, as well as how it affected my family and how I am managing my lifestyle for optimal heart health. I speak often for the American Heart Association’s Go Red For Women initiative since it was launched in 2004, as well as at numerous independent medical centers that offer programs on cardiac care and women’s health. Another presentation I offer is called “Dead: Been There, Done That,” which focuses on methods to embrace, rather than resist, inevitable change — even shocking change. I have another topic that is geared more for healthcare providers, called “Healing the Broken Heart,” which isn’t about failed romance, but concentrates on the importance of building a team approach between a patient and caregiver team, and finding ways to make these interactions both productive and personally fulfilling for all concerned. What are some of the anecdotes that you interject during your presentations to help others relate? I share recollections of my colleagues who witnessed my collapse, participated in the chain of survival and watched the firefighters and EMT teams resuscitate me, including their very human (and occasionally funny) responses at the surreal elements of the situation. As I mentioned before we had just spoofed the TV drama ER on our show before I collapsed, and I show that video sketch called ‘ERR’ to all my audiences. It is quite popular! I also talk about my invitation to appear on Oprah, including my concerns on how to best represent 'dangerous arrhythmia' on the heart healthy lifestyles show. It isn't as cheesy/dorky as that sounds! In speaking about surviving and living with a chronic arrhythmia, I discuss how my health has affected my family and what I’m doing in terms of managing the risk factors that are within my control. Most important, I feel, is the end of my talk where I reveal that my SCA is not the first time my family has been affected by heart disease; very unexpectedly my only brother died at age 39, six years before my SCA, and his symptoms and pathology were almost identical to mine. I don’t know of anyone who hasn’t prematurely lost either a family member or a close friend to heart disease; however, I have a unique perspective on death and heart disease, having lost my only brother and then seeing my family go through all of it again with me when I briefly ‘left,’ even though I did ultimately survive. It has made me want to do all that is in my power to safeguard my heart health so I don’t put them through that literal heartbreak another time. I close with a humorous and emphatic version of the Pledge of Allegiance, tweaked as a ‘Heart Pledge,’ which hopefully leaves everyone with a positive, energized, and realistic attitude about revering their hearts. What other advice can you offer patients going through a similar situation? A special word about coping with the aftermath of SCA: paying and managing the bills. That was harder to laugh about. My advice is to be really nice to customer service reps at the billing offices, as they will often go a long way to help you navigate the inevitable labyrinth of charges. Keep copious notes whenever speaking to billing representatives. Ask your care providers about any potential discounts they might consider. Additionally, if there is some kind of SCA survivor or ICD patient support group available to patients, I think it is extremely helpful to attend, especially in the first few months to a year after their event. Sharing similar experiences and hearing from those further out from their SCA is very reassuring and is an opportunity to find common ground that is totally unique to survivors. To be fair, I am among the extremely lucky ICD recipients who have never experienced a therapy shock from their device other than during a medically-supervised standard interrogation, so I can’t speak to the emotional and physical impact that creates. Having heard it described at a support group meeting by fellow ICD patients who have received therapy shocks, I am now less frightened by a potential ‘zap’ or two. Ultimately my SCA has made me more eager to assertively live my life and not put things off. Hey, even with an ICD, there is always that proverbial bus out there that could have your name on it! In keeping with living life to the fullest, this winter I plan to squeal with joyous bliss as I whoosh down a zipline through a snowy forest. I can barely wait for the flakes to fall. I’ll be sure to take my beta-blocker first, though! What do you think is most important for cardiac electrophysiology staff to know about their patients? Build extra time for Q & A in the first few appointments, and find a way to ‘lead the patient’ toward questions you feel they may want to ask or toward emotions they may need to express. Expect to hear the same questions several times in subsequent appointments, but be patient and welcome the dialogue. I found that even though I took notes and sounded like I was a reasonably intelligent person in my conversations with my EP nurse and doctor, later when family and friends asked questions about my device or my arrhythmia, I was often stuck for cogent replies. After surviving SCA, which in most cases is unanticipated, a survivor’s brain and emotions are reeling with processing the information and feelings. I think it is also important to encourage patients and their families to return to as normal a lifestyle as their individual conditions and emotional recovery will allow. Many of us survivors have no memory of the traumatic event and are anxious to get back to normal lives. We aren’t all that terrified by the actual event, we only remember how freaked out our families were when we finally became conscious and alert in our hospital beds. Our bodies may feel a bit beat up, but we don’t feel especially frail. Although it is loving and necessary to be hovered over and tended to in the first part of recovery, continuing to be treated as a ‘fragile thing’ ultimately keeps a survivor from actively enjoying the life their caregivers have worked so hard to restore! Lovingly and firmly encourage us folks with second ‘birth’days to thrive, not just survive. Tell us about the other heart-related events and organizations you are involved in. The end of 2008 will mark my sixth year on the board of The Hope Heart Institute, a non-profit organization based in the Pacific Northwest dedicated to preventing and treating heart and blood vessel disease and to improving the physical, emotional and spiritual quality of life for all at risk of (or afflicted with) cardiovascular disease. I am affiliated with the Sudden Cardiac Arrest Association and Sudden Cardiac Arrest Foundation, as well as have an ongoing collaboration with The American Heart Association throughout the country. Is there anything else you’d like to add? Oh, I think I’ve shared plenty already, don’t you?! Seriously, I love what I do, am deeply grateful to have this second chance, and feel honored that my story has struck a chord with some audience members enough that they write or call to tell me they have taken action to protect their hearts. For more information, please visit www.traceyconway.com