My quirky reading list—click here for READING—is haphazard, reflecting serendipity (books from friends or noticed on a waiting room table) as much as my needs at various times, whether for information, companionship, solace, expansion, or distraction. These books may be useful to anyone coping with a major life change of any kind, not just the vicissitudes of cardiovascular disease. My list is by no means a review of cardiac literature or the literature of medicine. And I certainly intend no slight to worthy books not included here. Some I may have read long ago, their impact deep within my subconscious. Or they may still be in my pile of books to read!
Following my first heart attack, books and magazines were the first friends I asked for because I could barely speak for lack of breath. Besides, I kept falling asleep during conversations. Picking up where I left off in an issue of The New Yorker (readers will remember that Jack found it on my bedside table at home, waiting in vain for me to return from that fateful yoga class) connected me to my life Before. And that was as fine a start as any to the recovery of Myself.
Sometimes I think there is a correlation between people’s ability to cope with the complexity of their lives and the quality of their reading. I know that I could not have persevered through years of critical illness without reading lots of really good material, including novels, memoirs, history, and poetry, as well as books on science, high-tech medicine, and complementary medicine—even cookbooks and books on gardening. Reading broadly, I gained vital perspective, especially when I was feeling singled out and teetering toward self-pity or useless anger. Books reminded me that I, too, am part of the human and natural continuum, and that there are no exemptions from life, whatever is yours. Above all, they were good company. You see, our intimates can only accompany us so far into what writer Susan Sontag called "the kingdom of the sick." Without reading, I would have been insufferably lonely and far less capable.
When death came for me, I had been in shape for the fight of my life. Many cardiac patients are not. Furthermore, because our family already possessed a life-long commitment to a healthful life style, I had a ready team of intimates who fully supported my recovery and rehabilitation. I feel for families who are caught utterly unprepared for the discipline that is required for heart health. So, I urge you to turn your cardiac rehabilitation into a family commitment that will return you to full life while building habits that will benefit generations of your loved ones.
For the cardiac patient, there is no encouragement more powerful than having a buddy or two—spouse, friend, sister, child—in exercising, eating well, and being mindful. My buddies, especially my husband Jack, have helped me stay on track. Their cheerful participation has turned my life-sustaining cardiac discipline into fun, even a form of intimacy. Out of support, my marathoner husband switched from running to walking with me. Guess what? He has stayed just as trim and fit and avoided knee surgery! Studies now confirm that daily sustained and vigorous movement (walking)—even just 15 or 20 minutes—makes a huge difference in our cardiac and overall health. Besides, Jack and I love our walks. There is something about walking outdoors that inspires aimless, heart-calming conversation, bringing us closer. Walking together is also great for resolving conflicts, like a really funny debate I remember about show shovels.
As an experienced and fit patient—and three-time graduate of cardiac rehab—I promise that rehab is essential to your survival, even if your doctor fails to emphasize rehab. Receiving training from dedicated professionals will boost your confidence (relaxing your heart) and give you the skills and knowledge for healing and enjoying your life. Choose a rehab program that emphasizes mind/body training based on the research of Herbert Benson, MD and other leading mind/body practitioners.
If you are lucky enough to live in Maine, I cannot say enough about Turning Point, Maine Medical Center’s cardiac rehab program, located just south of Portland in Scarborough. Their thoroughness and compassion were invaluable to me, especially their mind/body training. Call 207-396-8700 or toll free 866-556-2550. You can find them at www.maineheartcenter.org.
Crossing the border into New Hampshire, I also benefited from superb cardiac rehab training and supervision at Memorial Hospital in North Conway: 603-356-5461.
Massachusetts General Hospital’s cardiac rehab program in Boston is terrific. It launched me into the world following my heart transplant. Go to www.massgeneral.org and then search for the Heart Center. Or call 617-726-1843. Happily since 2006, MGH has been home to the Benson-Henry Institute for Mind Body Medicine. Check out their programs at www.bensonhenryinstitute.org or call 617-643-6043.
Your new job is staying alive, and keeping up with the latest cardiovascular information is an important part of your responsibilities. Being informed will strengthen your partnership with your medical team and lead to better care. Taking charge of your own heart will also relieve stress on your loved ones.
Harvard Heart Letter: www.health.harvard.edu. I look forward to every issue of this newsletter. It is clearly written, balanced, and informative. All major heart centers have their own cardiac newsletters and they are all superb. Subscribe immediately to any one of them!
Harvard Women’s Health Watch: www.health.harvard.edu. This is a very good newsletter for the latest information and debates on women’s health.
The New York Times: www.nytimes.com. If anything is happening in cardiovascular disease and transplantation, the latest news will appear here. The Tuesday “Science” section is a must.
Because women's heart attacks often do not announce themselves in classic male "Hollywood style"—sudden, immense pain causing the patient to clutch his chest—women far too often ignore the onset of their equally devastating cardiac events. Women's heart attack symptoms are more subtle and are often the only symptoms they experience: unusual fatigue, shortness of breath, back or jaw pain, and nausea/vomiting/flu-like symptoms.
Do not dismiss your feelings as a flu coming on or a little stress or indigestion. Please pay attention, especially to your intuition. Though my SCAD-induced MIs both included feeling immense pressure in my chest and tingling down both arms, my most important symptom was a voice within that whispered, “Something is very, very wrong. Pay attention.” That voice of intuition saved my life—twice.
Uncomfortable pressure, squeezing, fullness, or pain in the center of your chest that lasts more than a few minutes or goes away and comes back
Pain or discomfort in one or both arms, the back (especially upper back), neck, jaw, shoulders, or stomach
Shortness of breath or difficulty breathing—with or without chest discomfort
Clammy sweat, nausea, vomiting, or other flu-like symptoms
Lightheadedness or dizziness
Unusual fatigue or weakness, especially with exertion
Unexplained feelings of anxiety or “impending doom"—perhaps a voice within that warns you,"Pay attention. Something is very wrong."
Following my first heart attack (and flying on meds in my hospital bed), I was so desperate for another patient's perspective that I called a favorite client—a young, vigorous former Marine who had survived a heart attack. As unaware as I certainly was at the time about women and heart disease, he could barely respond for trying to grasp that energetic Deborah was this faint, breathless voice on the line.
I remember asking plainly, "What do I do?" He listened a little before making a graceful excuse for ending the conversation. After recovering from his shock, he called back a few minutes later, ready to talk. I am forever grateful.
1. Call 9-1-1. Yes, I mean YOU, super-woman. Consider this tragedy: According to the American Heart Association, when women experience heart attack symptoms, they are less likely to call 9-1-1 for themselves than they are for someone else.
2. Take an ambulance to the nearest hospital. Do not drive yourself or have someone else drive you—unless you have no choice. If this is a heart attack and it unfolds in transit, you will want to be with professionals who know how to save your life.
3. Thoroughly chew and swallow an aspirin without water. Dose: 1 chalky adult aspirin (325 mg.) or 4 baby aspirin (81 mg. each). Aspirin thins your blood and may prevent dangerous clotting. Keep aspirin in every bathroom cabinet, in your purse, and in your car.
4. Stay calm. It helps to take deep, slow breaths while you wait for emergency responders. Breathing gently (through your nose, mouth closed) activates your biological Relaxation Response, a powerful assist to a stressed cardiovascular system.
5. Be direct in your communication. “I think I am having a heart attack" mobilizes people quickly. If it turns out to be a little case of indigestion, today's enlightened clinicians will sing your praises for taking your life seriously.
By now we have many cherished friends among cardiac professionals, both clinicians and administrators who have joined us in growing awareness about women and heart disease. These kind, dedicated, and exceptionally bright people have expanded our world. Mind you, Jack and I are not "joiners" by nature. Besides, I have spent long periods of time in bed very ill, while Jack has spent just as long taking care of me. But when we can manage, we volunteer for the cardiac community: giving talks and interviews, advising patients and organizations, attending American Heart Association Heart Balls and Go Red! events for women and heart disease, as well as proudly marching in Heart Walks. Every time we participate, our sense of isolation abates and we relax a little more into acceptance.
Thank you, dear readers of AN ARROW THROUGH THE HEART, for sending me little notes asking after my health. Yes, I am very much alive! In 2006, I gratefully received a heart transplant at Massachusetts General Hospital in Boston. Today I am thriving, transplant complications and all—the subject of the book I am writing now, PERFECT STRANGER. Stay tuned!
A PERSONAL PLEA FOR ORGAN DONATION
Please become an organ donor. Both life and love are at stake. Over 120,000 people are currently waiting for organ transplants in the United States. Today’s shortage of donated organs means that an average of 21 people die every day because an organ does not become available in time. As I write this, over 4,000 Americans need a heart transplant; about 1,500 of them are younger than 50. Each year, only about 2,500 hearts become available for transplantation. As one of the very fortunate to receive the heart of a perfect stranger, I am pleading with you to Donate Life. In becoming a donor, you will make it possible for another person to live and contribute more love to this world.
HOW TO MAKE YOUR WISH TO DONATE CLEAR: 2 STEPS
MY FAVORITE TRANSPLANT SUPPORT ORGANIZATIONS
If in the process of writing PERFECT STRANGER I learn of more transplant organizations, I promise to add them here.
There is a lot of support available to you in the universe. The following sections within this page contain information and resources that you may need immediately, especially if you are a new resident in Cardiac Land.
I'll be adding more information gradually, particularly on my blog (as I figure out what a blog is). "Follow" me on Facebook to receive notices of updates!