SUPPORT FOR YOU
with love from a cardiac survivor with lots of experience
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.
First thing to understand: you are not alone
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.
PLEASE VISIT THIS WEBSITE FROM TIME TO TIME FOR UPDATES
Available as an eBook at online retailers and at your local bookstore. All my book-related earnings are donated to cardiac causes. So, buy a book and save a life!
Women’s Heart Attack Symptoms
our symptoms are often different from men’s—and often tragically ignored
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.
Trust your intuition if you feel any of these heart attack symptoms, especially in combination
- 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.”
If you think you are experiencing a heart attack
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.
Jack and I have been enriched by our involvement with cardiac organizations.
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.
these are my favorites:
- www.massgeneral.org/heartcenter/—The link
into the cardiac department of Massachusetts General Hospital, named
the top US hospital in 2015. I hope other fine cardiac centers will
forgive me for listing only the hospital that has been saving my life
for almost 20 years. If Boston—with its Partners Group of superb
hospitals and research centers—is not convenient for you, be sure to do
your own research to find a top cardiac center near you. The experience
and resources offered by the best are life-saving.
- www.heart.org or www.GoRedForWomen.org—The
American Heart Association website that is focused on women’s
cardiovascular disease. I just love the AHA! They have local chapters,
staffed by uncommonly helpful and committed people.
SCAD Alliance, offering the latest information on spontaneous coronary
artery dissection (the cause of my two major heart attacks, 1997 and
2006). Founded by a dynamic SCAD survivor, the Alliance raises awareness
as well as funds for research at any qualifying institution. The staff,
like the website, is warm and generous with help.
and education focused on ending gender disparity in cardiovascular
disease research, prevention, and care. This site offers
helpful checklists for managing women’s cardiac health. Women’s Heart
Alliance initiatives include college-based cardiac screenings
and city-by-city programs to make women’s cardiac health a priority in
key institutions. The Women’s Heart Alliance has influential star power
and clout as the product of a unique collaboration between the Barbara
Streisand Women’s Heart Center at Cedars-Sinai Heart Institute and the
Ronald O. Perelman Heart Institute at New York Presbyterian
Hospital/Weill Cornell Medical Center.
- www.WomenHeart.org—The National Women’s Coalition for Women with Heart Disease. Check out their annual Science and Leadership Symposium, providing advocacy training to women.
- www.hrsonline.org—The Heart
Rhythm Society, a wonderful organization dedicated to increasing
knowledge about the heart’s electrical system. Its prime focus is on
education for electrophysiologists (cardiologists who specialize in the
heart’s electrical system). The HRS website is also immensely helpful to
patients, especially for information on specific types of arrhythmias.
- nhibl.nih.gov—The Heart, Lung, and Blood Institute of The National Institutes of Health. The NIH cardiac advocacy program is called The Heart Truth. This organization primarily conducts research and has a very informative website.
HEART TRANSPLANT SUPPORT
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
- Go now to www.DonateLife.net and register online as a donor in your state.
- Inform your family of your wish to be a donor. It is always easier for your loved ones when they know of your end-of-life decisions.
MY FAVORITE TRANSPLANT SUPPORT ORGANIZATIONS
- www.unos.org—The United Network for Organ Sharing manages the US organ transplant system. The colossally good people of UNOS help match donors with recipients. Their website is full of information and connections, and it has deepened my appreciation for all that is involved in the gift of my new heart.
- www.transplantgamesofamerica.org—The Transplant Games of Americaand the World Transplant Games Federation (www.wtgf.org) are truly inspirational. Their film clips alone are helium for the spirit.
If in the process of writing PERFECT STRANGER I learn of more transplant organizations, I promise to add them here.
CARDIAC REHABILITATION & NEWS
Your chief cardiac rehab coach may be someone close to you
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.
It is essential that you sign up for cardiac rehab training
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.
My favorite sources for cardiac news
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.
BOOKS THAT HELPED ME COPE WITH CATASTROPHIC ILLNESS
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!
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.