Dr. Barbara Keddy: “I was pitifully ignorant about heart disease”

by Carolyn Thomas  ♥ @HeartSisters

I’m very pleased to share this with you, my heart sisters – although this is not a happy story.  It’s essentially the journal of a heart attack. The author is Dr. Barbara Keddy, a teacher of nurses, professor emerita at Dalhousie University in Halifax, and author of the book Women and Fibromyalgia* – a condition that Barbara herself has lived with for over 40 years. Barbara and I first “met” each other online when we both happened to be named recipients of the 2009 Women’s Health Hero awards from Our Bodies Ourselves of Boston that year – she representing the east coast of Canada, and I out here on the west.

I’ve been reading her Women & Fibromyalgia blog and quoting her wise words ever since (here, here and here, for example). And we’ve been casually emailing back and forth for four years – until one day in January, when I received a terse one-line message from her: she had just survived a heart attack.

Barbara’s experience is unique because she’d already been living with the constant pain of a debilitating chronic illness for decades. What happens when such a person gets hit with the double whammy of a serious heart attack on top of everything else?  Here’s her story, in her own words: 

The Event

“January 19, 2013: On  a bitterly cold night, I awoke at 1:10 a.m. feeling very strange, a sensation I can’t explain, followed almost immediately with a crushing pain in my back and chest. I woke my husband, Milt, and told him I was having a heart attack. He didn’t believe me, said it was a panic attack and to take deep breaths. I broke out in a cold sweat, begging him to call 911. He was not convinced by my symptoms until I said:

“I’m dying. If you don’t call 911, I will die.”

“It really is something one knows instinctively: ‘the near death experience’. It was not one of the usual night terrors I had been having all my life. Five minutes later, the ambulance arrived. I remember the cold as I sat in the emergency chair outside on the sidewalk waiting for them to get the stretcher to put me in the ambulance.

“I was in the Emergency at the hospital in about two or three minutes. By 3 a.m, I was in the CCU with a stent in my left coronary artery. The pain had ended.

“I can still, after four months, relive the horror of the experience. It was the worst thing that has ever happened to me and my life has been changed forever. I now have the label of a cardiac patient. I am a new member of a club I did not want to join and worse, I don’t know the ins and outs of this organization. There is so much to learn and I am dragging my feet as I learn, wishing there was some way to resign from the membership.

The Diagnosis

“My right coronary artery is occluded and was left alone, as it has probably been that way for years. My left coronary artery was where the stent was inserted; I was told that I have a ‘medium’ amount of heart damage. My valves are working fine. My ejection fraction is 40%, below normal of 55+.**  Without any reservations, I can say that I received extraordinary care and treatment. More importantly, no cost and no paperwork for the hospital stay (Ed: thanks to Canada’s universal health care system).

Communication Skills

“The day after the heart attack, a resident physician came in to tell me that my ejection fraction was only 21%.** I had never heard the term before and I asked the prognosis. He said people only lived about one year with it that low; the normal was 55%+. The head nurse accompanying him was apparently horrified, as was the more junior resident. My husband and I were devastated.

“After an echocardiogram a day later, a new, exuberant resident came bouncing in the room, smiled at me and told me my ejection fraction had gone up to 40% – and would probably improve even more with medications and exercise. (I have since learned that the idea that ejection fraction improves with medications is not widely accepted.)

“The contrast between the two residents’ communication skills was very noticeable and affected me greatly. It was the beginning of the rocky road of highs and lows that continue to this day – although much less dramatically. Every word said to me would be examined and the negative would be remembered.  (See also: When Doctors Use Words That Hurt)

Nursing Care

“Having taught in two different Schools of Nursing for 35+ years of my work life, I can spot a good nurse in a matter of minutes. The nurses in the CCU were well-indoctrinated in the medical model. While this is very important for the physical care of the cardiac patient, I did not receive psychosocial care, which in hindsight, was what I craved and needed most desperately.

“For example, I needed nurses who could talk to me about:

• my emotions
• what it would be like coming home from the hospital
• how I would be weepy for a time
• who to call on when I had questions
  

“I also needed a discharge planning nurse or someone to spend time educating me at the bedside at night when the nurses themselves often had little to do – all this would have been so helpful.

“I received a booklet from the hospital called Life After a Heart Attack, but it is badly in need of revision and certainly not in tune with emotional issues.

“I was pitifully ignorant about heart disease and in particular gender issues around the topic. Instead, I was sent home from CCU with that booklet, knowing that the nurses knew so much but did not try to educate me about what it would be like at home.

“In fact, I didn’t even know what questions to ask of them.

“It reminded me of bringing my first baby home from the hospital all those years ago and wondering what I would do with him and how I would care for him – everyone thinking that because I was a nurse, I would know these things!

“As a cardiac patient knowing almost nothing about heart disease, I was on my own. While the physical care in the hospital was excellent, my knowledge about how I would spend the rest of my life was that of a neophyte.

“For years, I have been studying issues around neuroplasticity and the ways in which the brain can be changed. I have been going down this same brain pathway now for four months and every time I tell the story, I reactivate the horror.

“Talk therapy for people who have experienced a crisis means that the brain experiences the trauma all over again. I want closure on this particular brain pathway. I am reliving the experience every time I tell it. Even now, the rest of the day after writing this has been a difficult one. This is my final telling of the story of those six days.

The Homecoming

“It was the dead of winter, cold, icy, dreary and all that winter in Nova Scotia can be that is depressing under normal circumstances. I knew that my husband was nervous about me being home, but given his optimistic, non-complaining (and male) nature, he did not discuss these things with me. I still do not know about his fears.

“Since I had not walked in the hospital except for a few steps, I was weak –  but more than that, I had a ‘black bikini’ abdomen, the result of bleeding from both groins after my cardiac catheterization. While it was an extraordinary sight, no one from the hospital gave me any advice as to what I should do about it. Nurses came in to gaze at this bruising in wonder, but I did not think to ask what I should do about it. Walking was very painful.

“What happened next was the beginning of the most amazing set of circumstances that would develop throughout the next few months: when I needed help, I would luckily find the right person/s who could show me how to cope. In this instance, it was my next door neighbour, a physiotherapist who came knocking at the door. She showed me how to move my thighs to break down the stiffness of the groins and to insert heating pads tightly into my groins. I began to walk without pain. The first hurdle of many was over, even though the black abdomen did not leave for many weeks. This became only a very minor concern.

“Once I arrived home, the phone began to ring non-stop. Food arrived, and flowers flooded the house. Cards, emails, visits, fruit baskets, gifts of many sorts, books and other thoughtful gestures stunned me with the kindnesses of people and made me very weepy. Milt became a gatekeeper, as it was very stimulating, but at the same time also very comforting.

“An acquaintance, a retired cardiac surgeon with whom I had worked on a committee, called almost immediately after I was home. During the conversation he asked how my emotions were; this was the catalyst I needed to allow myself to cry openly.

“No other health professional in the hospital had mentioned my emotions.  I am forever grateful to him for that insight. He told me how normal it was to be overwhelmed, and gave me sound advice about dealing with my distress.

“It was unsettling to be back home in the place where I had the heart attack.

“Scuff marks around my bed where the emergency workers had looked after me, and marks on the walls where they had carried me out were grim reminders of that horrific night.

“My bed felt unsafe and I dreaded going to bed that night – and I sometimes still do.

“Almost from the first minute I walked in the house I contacted Carolyn Thomas, as I knew that this website Heart Sisters would be my lifeline – and in fact, not surprisingly, it was indeed the very best source of information I could find. I cannot stress enough how valuable it was during the most stressful time of my life.  There was no one else I could turn to for answers to the many questions I had.  I did have a neighbour – a nurse and a former colleague who was an expert on women and heart disease – but she was away for the winter. Without Heart Sisters, I would have been at sea in a new world.

“Many nurse friends came to visit but, like me, they did not know much about heart problems. In hindsight, now that I know that one in three  women will die of heart disease, I am shocked at how little is known by us nurses.

“I would never pit breast cancer against heart issues, yet how much more educated we are about cancer and how little we discuss heart disease. Where are the educators and why are they not sending this message out more forcefully?

“Now that I was home, I wondered what to do with myself. I welcomed the many, many visitors as a distraction and I also read novels, sometimes one a day, as an escape for the first two weeks.

“The booklet from the hospital said I should walk for five minutes and ride my exercise bike for five minutes after the first week at home, gradually increasing five minutes each week. I was determined to be compliant and so after Week One of primarily sitting/lying on the sofa, I took my first walk outside.

“It was extremely cold and there were layers of snow on the sidewalks, but I had layers of clothing and sneakers so I could walk up the street for 5 minutes. Milt watched me anxiously from the front deck. Then I approached my recumbent bike, one I had used for 10 years and loved. I sat on the seat and spoke to it. “Don’t hurt me,” I said out loud.

“My ‘new normal‘ had begun.

“On very snowy days, I walked round and round the house, but mainly I bundled up and walked outside. This is my future, I thought – and indeed it is just that.

Social Networks

“I have now learned the true meaning of friendship first hand.

“I understand what it means to be a true and loving friend. It doesn’t mean just a perfunctory phone call when someone is in crisis. Instead, it is being around for the long haul, knowing when someone needs your support during difficult times – in short, being there. Mainly it is what women do best. The women in my life, with few exceptions, were nothing less than extraordinary and kept me from dwelling too long on my anxieties. To them I owe so much.

“I hope I can be the kind of friend that many have been to me during these past few months. For them, it meant sometimes daily emails, weekly visits, phone calls, food, gifts, books, flowers – but for all it meant love. I also found that a couple of friends whom I had considered close were not there when I needed them, but those were minor disappointments.

The Spouse

“I am so fortunate to have the most caring spouse imaginable. Milt was competent in household duties, attentive to my physical needs, non-complaining during the first two weeks as I did what many have done before me: prepare for my death.

“I have spoken with and read about many others who have had the same experiences, going through the process of sorting through the household believing one would not survive the next week or even the night.

“Milt allowed me to undertake these tasks, even though I knew it was painful for him to watch. I would weep quietly living through the pain of leaving him and my children, imagining their sorrow. Those thoughts are still with me frequently.

Cardiac Rehab

“Sixteen days after my heart attack, I attended the first of three 2-hour lectures in the Cardiovascular Health in Motion program. I was looking forward to it, thinking I would be around others with whom I could commiserate and find emotional support that I badly needed. I was desperate for this emotional support, and presentations about psychosocial aspects of living and thriving with heart disease.

“But in fact, the 2-hour Power Point presentation alarmed me greatly. I left the room after the nurse likened a coronary stent to the inside coil of a ballpoint pen. The presentation was exceedingly frightening as the anatomy and physiology were very detailed.

“There still wasn’t anyone with whom I could spend time with talking about the fears and anxieties I was experiencing, other than my almost daily emails to Carolyn.

“The next two lectures a week apart were much less frightening, as they were about exercise and nutrition. Both covered all we needed to know about the topics and were presented in a professional manner. However, we were required to attend eight more lectures or we could not take part in the gym exercises. Many of these lectures were again about nutrition.

“Forty-six days after my heart attack, I was finally given a space in the gym with others who had heart disease like me.

“By now, though, I had followed the regime outlined in the heart attack booklet from the hospital and was walking 30 minutes a day and biking 30 minutes a day in addition to my stretches. Going to the gym was actually less strenuous than what I was doing on my own, but I enjoyed it nonetheless as I could be there a few minutes early and speak with the other participants, an opportunity I could not find elsewhere.

“The camaraderie among the patients was very pleasant. The gym instructors were the physiotherapists, while the nurses took blood pressures. It was not a forum for group education, although there may have been heart health information given to individuals. I personally did not receive any.

“The staff were extremely friendly. Many of us discussed among ourselves how low our pulse rates were – even after exercise – but we did not ever have the benefit of a pharmacist to enhance our understanding of medications and the great impact they had on our bodies”.

Gender Issues

“There can be little doubt that men and women experience heart disease in very different ways.

“The women I came in contact with were generally very much more subdued than the men. All admitted anxiety and fearfulness to me, but the men spoke of more tangible issues like medications.

“At cardiac rehab, there was at most one woman to every three men. None of the women in my gym group spoke out loud, while the men joked and were very vocal. This is not uncommon in a mixed group, but here it was so obvious.

Exercise

“For the first two months, I followed the regime of the booklet I had received from the hospital and the gym workout. However, they were designed as one size fits all.

“I am unique. I live with constant pain. I am old. I needed an individualized plan.

“By the third month, I became exhausted, and fibromyalgia flared often. I was overdoing my exercises, walking 30 minutes a day and biking 30 minutes a day. The sense of euphoria I had experienced earlier led me to believe that I could do this routine without exhausting myself; this was now being severely tested.

“My legs ached and pained. I did not sleep very well. I could barely move after I had exercised, and if I had not slept the night before, I was like a zombie.

“In the home, Milt did everything. I was just surviving to do exercises and little else.

“Other than the regime of exercises, I yearned for peace and quiet, very little stimulation, except for the short visits of friends.

“This is a paradox for those of us with fibromyalgia as we seek out excitement and stimulating activities, overdoing it on days we have energy,  knowing full well that we will suffer the next day! It is even worse now that I am recovering from a heart attack.

“Living with two chronic diseases is taking a toll on my aging body.

“Now that it is the fourth month, I am somewhat confused as to how to proceed with exercise, but I will work through this. Once again, there is no professional with whom to discuss a sensible program and I have to begin at square one. Perhaps 60 minutes+ is not carved in stone for seven days a week! But, I am passionate about continuing exercise with a routine I can develop that will not cause more pain from a fibromyalgia flare-up.

Medications

“I confess to knowing very little about the medications until the second month, as Milt was the one who organized them all for me. The idea that I was taking all these chemicals just to stay alive was very disheartening and overwhelming. It is still worrying.

“Added to this was the Gabapentin that I take four times a day for fibro pain and often Tylenol. I am worried about these chemicals in my body, but am helpless to do anything about it. I am trying to gradually wean myself off of Gabapentin.

“I am nothing but compliant and will not deviate from my regime. The beta blocker which I take twice a day makes me very tired, and often my pulse rate is only about 46-48.  The fatigue from those meds as well as the chronic fatigue of fibro is not pleasant. After the exercises are done for the day, I am even more fatigued.

“However, I am constantly critical of myself for not taking medications earlier when my blood pressure was erratic and my cholesterol was elevated. If I had done what the family doctor suggested, I believe I would not have had the heart attack. I am convinced of that. It is entirely my fault for denying I had heart disease. It is the biggest regret of my life.

“My parents both had heart attacks in their 70s and bypass surgery. Why did I keep avoiding educating myself about this? I fell into the trap of thinking that because I was a woman, I was healthier than the men my age.

“At the gym, we all agreed that while we are such a diverse group, the one thing we have in common is a parent/s with heart disease. One can exercise and eat a sensible diet, but the genetic pattern is there! I am convinced that once the blood pressure is elevated and the cholesterol begins to creep up, heart disease has begun.

“I loathe the idea and I may be wrong, but I suspect that diet and exercise alone will not stop the evil plaque from continuing its eerie growth. Yes, exercise is extremely important and diet as well, also learning how to deal with stress, but genetics will foretell the future.

“The worst of all is that women are not taught from an early age to keep tabs on their cardiovascular health, in the same way that they are given advice on breast health.

“I am not a believer in natural/alternative/complementary concoctions  and often they interfere with prescription medications so that is not an option for me. Others may find that they work for them. I am more inclined to take evidence-based approaches to heart disease. Still, reading the Globe and Mail this week, I noted the editorial about how physicians often over-prescribe medications for those who do not have heart disease, in particular prescribing a statin. (The one I am now taking is Lipitor.) I faithfully follow a regular routine with my medications – while wondering if they are all helpful.

“Obviously I have strong opinions about women and heart disease and of course my views are open to debate. Nonetheless, these are the conclusions I have reached in the past four months.

The Cardiologist

“I have had one visit with the cardiologist, a wonderful man with an amazing personality. I asked him not to give me too much detail but to tell me what I needed to do to proceed forward. I told him I had lost 15 pounds, was exercising 60 minutes a day, and going to Mindfulness Meditation classes.

“He was very pleasantly surprised, and said I was a model patient and doing more than the general population! After a quick visit, he told me I did not have to go back.

Mindfulness Meditation

“Suggested to me by a social worker at my family doctor’s clinic as well as coincidentally meeting one of the psychologists who directs this class, MM became (next to Carolyn and her extraordinary website) the most important practice and support group for me. While I have nothing much in common with the participants in the group except that we all have anxiety (and for  many also depression) it is the place where I needed to be. It is not run by the heart rehab people nor do they ever suggest or perhaps even know about it. Rather, it is run by Community Mental Health and, like rehab, there is no cost. Amazing!

“Every Thursday noon for one hour, this great program is presented. I have also enrolled in the 8 week session on MM and depression. I try to meditate every day.

“It was there that I was finally able to release some of my anxiety and develop a more optimistic (?) approach to this condition of mine which feels somewhat like a time bomb in my chest. I am not ‘cured’ of my anxiety, but I am more in control of it. I have lived with anxiety all my life.

“In addition to this program, I met with a psychologist for three sessions and attended five weeks of  Stress Reduction classes.

“I have done all that I can to help me survive as long as possible. Without Milt, my sister, loving friends, Carolyn at Heart Sisters, and my mindfulness meditation, I would not be writing this long record of the most horrific experience of my life.

“It takes too much courage to write. I do not have a great deal of courage; I never have been very brave. I will probably not write about this again. I will, however, continue to talk to anyone who will listen about women and heart disease.

“My children continue to be a primary reason to keep on keeping on, but their anxiety and fear, while unspoken but sensed, is sometimes too much to bear. This is written primarily for them.”

© 2013 Dr. Barbara Keddy  –  Photo image of common nursing tools: Béhance

♥ 

* Fibromyalgia is a musculoskeletal condition characterized by widespread chronic pain and fatigue, specific tender points, and sleep disturbance. Drawing on her own experiences as well as the stories of 20 other women living with the challenges of fibromyalgia, Dr. Barbara Keddy’s book Women and Fibromyalgia: Living With an Invisible Dis-Ease discusses current theories of causes and types of treatments. She also speculates about why this condition is more prominent among women than men. By sharing these stories, she highlights the invisibility of the daily difficulties fibromyalgia sufferers face, and also offers hope that they will someday take back control of their bodies.  Visit Dr. Keddy’s excellent blog for more on women and fibromyalgia. 

UPDATE, July 4, 2018: Dr. Keddy’s new book is The Lamp Was Heavy, a history of nurses’ training in the 1950s. Ordering info here.   

UPDATED UPDATE, August 20, 2022:   Dr. Keddy’s latest book is called “Fibromyalgia:  Unravelling the Mysteries of the Dis-ease” is now available to order here.

♥

** Ejection fraction: a measurement of the percentage of blood leaving your heart each time it contracts. During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn’t empty all of the blood out of a ventricle. The term “ejection fraction” refers to the percentage of blood that’s pumped out of a filled ventricle with each heartbeat.

Q:  Did any of Barbara’s experiences mirror your own?

See also:

• Living with both fibromyalgia and heart disease (part very personal essay by Dr. Barbara Keddy, part book review of my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press). You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).