Women and Heart Disease: The Heart of a Woman

More of the saga... I guess you know that they post from most to least current, so read backwards, please!


All of these central figures in my life were essential. If you happen not to have the good fortune to have available to you a similar support network, seek out a willing nurse, colleague or friend to advocate for you and to help you feel safe. The difference it will make in your recovery is enormous, even if you have some misgivings, discomfort or shyness about it. Through the support you will receive, you will notice a decrease in fear and anxiety and an increase in relaxation and, most imperatively, hope.
When I was finally wheeled into the procedure room, nearly twelve interminable hours later, anxiety had turned to sheer terror. All the denial, all the thoughts of not belonging in the hospital had disappeared. Taking their place were immense worry, mixed with hope, tinged with only a modicum of belief in the power to meet this challenge and emerge victorious - even with my assemblage of comrades just outside the door.
The room was so large, foreboding, cold and the narrow operating table so hard and uncomfortable. The lab team was involved in casual conversation while bustling around the room, preparing trays of instruments, which I found inappropriate, implying aloofness. They seemed to have no idea that I was shivering with cold, uncomfortable, totally terrified and not particularly confident; they were busy chatting. I realized that for them this was routine, just another "angio". It amazed me that they were completely uninvolved with me, as though I was neither awake nor aware. I announced my state of being quite clearly and I guess they took my anxiety seriously, because my husband was allowed to come in to help me exercise calm and encourage trust, but to little avail. None of these feelings were unusual, just new to me.
What I did not know was that when my husband left the lab, he rejoined my daughter, mother and stepfather in an adjacent room where they watched an "instant replay" of my angiogram on a screen. They then had the ominous task of participating in making a decision about what course to take. Next, the interventionalist appeared with an announcement: "We have a problem". Since the blockage in the LAD was 100%, there was some question as to whether or not I could be helped by balloon angioplasty. He was not certain that he could open the artery and not confident that he could then properly place the little metal stent, a metal-like "gate" meant to keep the newly-unclogged vessel patent, or open. There was a distinct possibility that I ultimately would have to be taken on an emergency basis directly to the operating room for open heart surgery. I don't know that I could have rallied if called upon to assist in making such a monumental decision, but I was surely not available for consultation so he had to have the family reach consensus.
It was my daughter who was in the unenviable position of calling literally around the country to every doctor she respected, asking them to seek the opinions of their trusted colleagues in cardiology. This complete stranger who held my life in his hands agreed to attempt angioplasty coupled with stent placement, although he had expressed qualms about its likelihood of success. Stents are still relatively new in the field, having been introduced in 1995. No long-term studies were yet available, but this technical wizard's willingness to attempt the procedure could save me from bypass surgery, a rather unappealing alternative. There were no promises, but the decision had been made. I could have awakened in the “cabbage patch”, my affectionate (?) nickname for the unit bypass patients are taken to after coronary artery bypass grafts (CABG).
He succeeded, or so it seemed, and when I emerged from the lab, I remember receiving diligent care from the staff of after-care nurses. I was not particularly coherent, which frankly was my preference, and everyone was teasing me unmercifully when, after the procedure was complete, I was still asking for more medication, in a voice already slurred by narcotics! Once again, but totally out of character, I wanted not to be present; I who had spent my life trying to crawl ever-closer to the television set to witness any medically or surgically-related show, opted out of my own case. I have since spoken to many people who actually watched the monitor as first-hand witnesses to their own procedure. I needed to avoid that level of lucidity no matter how much medication it would take! Oddly, it was months before I was able to watch similar topics on television. Not only would I immediately change the channel, but my heart rate would climb and I would be on the verge of tears. My experience at the time felt so unique, but I know now that all of my thoughts and actions bore great similarity to those of us who have endured similar physical happenings.
When my family and friend were permitted to come around the curtain to see me, I remember most vividly their vociferous complaints. My somewhat relieved cheering squad had been basically sequestered in a room that was Antarctic, even compared to the post-op ante room in which I was shivering! Naturally, I would rather have been turning blue in the waiting room or boiling at the Equator than continuing to lie on the gurney, but I tried to express my condolences, quipping about my own "comfort" level, particularly to my frozen, exhausted, overwhelmed daughter. My humor intact, at least to the degree my consciousness allowed, I promised sweaters all around and was ready for the next phase. I would have gone anywhere to achieve an exit from the lab. I could not have known then one of the many things I now know: they were searching for a way out, too.
So, I was returned to the CCU, still not fully in command of my faculties, but presumably out of danger.
There followed about two days on the unit, involving a strange and unfamiliar level of incapacitation coupled with a feeling of being trapped, literally tethered to equipment, unable to venture even to the doorway. I had convinced myself that I did not feel sick enough to warrant intensive care, but admittedly and inescapably, I was not completely stable. The blood thinners were not working well enough and my heart rate was uneven. Since the weekend had arrived, my physician care was almost non-existent. If you have ever been in this disquieting situation, you know that there are many possible reactions, all of which are natural. The one that surfaces keeps hidden from view all the scenarios we elect not to expose. For example, in one of my more obnoxious moments, I instructed an uninformed on-call cardiologist to go back and read my chart before he re-entered my room! Although insulted and somehow seemingly anxious for my approval, he had no knowledge of my condition and no ability to answer any of the questions that were beginning to plague me. By this point, my daughter was furious and talking about the possibility of transferring me to another hospital. Patience was wearing thin, concerns were rising, tempers flaring, and I was not exactly making friends with the frustrated staff. My complaints were neither baseless nor sugar-coated, but they belied my desire to gain some degree of mastery or at least minimal control over what I was just barely beginning to comprhend was my condition.
I am actually not sure at what point my brother and sister (in-law, in life) were notified, but I do remember feeling so happy to see them and so beautifully close. There was a blur of visitors during those first several days, but most outstanding in my memory was my sweet, frightened brother, for whom this would engender, not surprisingly, a wake-up call. He would lose a little weight, exercise more diligently, adjust his lifestyle to protect himself. This actually did not come easily, since he at first announced that he was not the recipient of our father's genetic flaws. I remember telling him that as far as I knew there was no sperm and egg discussion regarding transfer of specific genes. He seemed to have inherited many positive features from our mother's side, but was not magically immune to the rest. His wife, my wonderful friend/ sister, was totally supportive and avidly in favor of his wise decision to change some of his potentially dangerous habits. They were both endearing, tearful, genuinely loving and concerned and we were to become closer to one another than ever. My mother felt a tinge of guilt from the first visit, but was easily forgiven!
Once I returned to telemetry, I had more freedom and there were visits, cards, flowers, gifts and phone calls from people who were important to me and some from those who were more peripheral. The common thread was that each person had concluded that they had better take this seriously in their own lives. What had happened to me seemed so unlikely that the general thinking was "if it could happen to Sue"… There was some solace in hoping that I could help transmit such an important, potentially life-saving message to as large a circle of people as possible.
Once back on the floor and able to begin to wash myself and even venture out into the hallway, I began to feel more human, even daring! It's funny how definitions twist: I dared to pull the IV pole without assistance and walked a few steps beyond the permitted parameters! Now that was me: a rule-breaker, downright mischievous!
I had survived and now would concentrate all my efforts on getting stronger. No one knew how dauntingly slow the process seemed to me already. Assembling the patience for a long journey was not my natural bent and wreaked havoc on my do-it-now personality. I also knew that I would have to summon up the courage to educate myself on a topic I did not want to utter in any sentence containing or referring to my name.
That education was foist upon me unexpectedly when I was brought to the X-ray department by wheelchair for chest films ("small complication" of fluid in my lungs and potential pneumonia). I was left alone in a hallway, waiting for my turn, my complete chart on my lap. It was my only reading material! Never one to do nothing, I began the perusal. My review: heavy, melodramatic, polysyllabic and unbearable. But there it was: “worsening of pulmonary vascular redistribution”; “diagnosis: CAD” (Coronary Artery Disease); “left ventricular wall function severely impaired”; “ejection fraction 30%” (60-80% is the norm, and is a determinant of the heart's ability to pump out blood returned to it by the venous system); “30% scarring” (necrotic, or dead, heart muscle). On and on I read, plunging myself into an abyss, really wondering if there was enough of a medical armament to pull me through.
On one particular hallway hike, I encountered the aforementioned insensitive clod who viewed me through his gender-myopic, emotionally lacking lens. I might not have bothered to pursue the closure I desired, but when he spotted me he eyed me with contempt, mighty far from the repentance I thought appropriate, so I made my move. It was calculated to be therapeutic, my natural style, but clear and no-nonsense in delivery. I ended up lambasting the poor creature because he had the gall to come back at me when I began my contributory little sermon. Initially, I let him know that I felt his manner left me feeling upset and peeved and was not constructive. I added that his training needed to include compassion, not condescension and that I did not think he was intentionally negative. When he came back at me with a fierceness belying his immaturity, I told him that he had been medically incorrect, as he well knew by then, but that his approach to me as a human being was even more reckless than his poor medical assessment. He remained belligerent, unwilling and/or unable to listen, so I suggested that his chief resident should be told the details of both this and our first encounter. He announced that he had an unblemished record and I should feel free to do whatever I wanted, never admitting even the slightest guilt. He continued to provoke me to the point of my allowing him to make my heart beat faster and my blood pressure soar, so I retreated to my room. By then, an audience of nurses and ancillary staff were sprouting antennae and making high signs. He was next victimized by my mother, who bounded toward him, intent on lambasting him further for the harm he caused her cub when he blurted "I saved her life!" Responding to his absurd level of arrogance, and never at a loss for words, she read him chapter and verse, standing too close to him to provide for the escape he would undoubtably like to have made. The crux of her message was that he may think he is wonderful, but she believed him to be an incompetent moron and an insensitive boob. She received the equivalent of a standing ovation, mimed applause included, from his co-workers who had been enduring his nonsense for months. It was a healthy release for her and a deserved bruising for him.
By day four, I was more interested in the activities of daily living (ADL, in the vernacular): brushing my teeth, using lipstick, eating, if minimally, but the level of fatigue was dismaying. I was definitely in a state of basic denial and was disturbingly ignorant about my disease. A life-long fascination with medicine, natural curiosity and the drive toward acquisition of knowledge were non-existent. I was asking almost no questions and absorbing little information. I had no interest in becoming a "heart patient" to the point that when the cardiology team would come to examine me and use terms like "coronary artery disease", I would feign looking around the room to see to whom they were referring. My baseline acceptance was about .1 on a scale of 1- 10. I never again dared to look at my chart, didn't ask what my blood pressure readings were, made funny comments as a defense, doing a great ostrich imitation, even without the sand.
I was not particularly trusting of the hospital or the doctors, none of whom were known to any of us or recommended by professionals we knew. I had acquired enough information to comprehend that I not been "repaired" through conventional bypass, so I dreaded the possibility that the stent would fail. I cried often, but was urged to quell these natural reactions so that I would not strain my heart. What a concept! How is that even possible? Talk about a "broken" heart; I was racked with fear, loaded with potentially dangerous medications that were not yet accomplishing their purpose and felt little control over my situation. My husband was trying to be present and positive but was obviously tired of the whole scene. Everyone was on overload from the ever-growing list of small disasters that had taken place - like the light bulb that broke overhead and landed on my bed, which was never properly attended to until my mother's intervention. Of course, these minor episodes provide our dismayed visitors with a safe venue for their feelings of fear and helplessness: it is a relief to react to a broken bulb rather than cope with a clogged artery!
My transfer back to telemetry just days before had been welcome, but I needed to go home, another expected reaction, familiar to all of us who have tolerated hospital stays.

Women and Heart Disease: The Heart of a Woman

It has been about a week since my last blog: as is so often the case, the good news and the bad news are the same... I just spent a few days in the hospital and had the usual diagnostic tests -- stress test (pharmacologic - ugh!) and my tenth angiogram. Yikes! Although I have had odd and disquieting symptoms for two weeks, MY VESSELS LOOKED BETTER THAN EVER! I have actually improved over time (just passed the eleven-year mark), establishing some blood flow in the area where there was a 30% deficit. Amazing! And off to cardiac rehab again... another adventure?! I'll let you know. On to The Heart of a Woman, in mid-chapter 3 of the manuscript...

By later in the evening of my admission, everyone went home and I tried to rest. I really did not know what to do with myself, still rejecting the notion that I was precisely where I belonged. I just felt too well to be in a hospital. I had a history of sleeping poorly and occasionally had availed myself of mild pills when deemed essential. I requested one at about two in the morning, and finally lapsed into sleep. Sleep was a welcome relief from the conflicting thoughts that plague any patient embroiled in such unsettling, confusing and dismaying array of thoughts. I was fortunate to have had sufficient experience to know to ask for this artificial relief and would urge others to similarly avail themselves.

Who Ordered a Sequel?: The Importance of a Support System

In actuality, the pain that brought me to the ER was never documented as a heart attack because not enough time passed between the first test and the next shock: I awoke less than two hours later, despite the strength of the medication. I had developed incredibly severe pain in my chest and down my arm, much more the expected signs we are supposed to identify but most typical in men: unmistakably, indubitably, undeniably I was in the midst of a serious heart attack, despite whatever observation I was supposed to have been given. If ever there is a time that one wishes for reverie and instead is hit full in the face with harsh reality, this is that moment.
I was taken to the CCU - Coronary Care Unit - but it did not seem like much was being done for me during this drama. I was given morphine and I can't remember how long it was before the pain began to subside. I had called my house where both my husband and daughter were on the alert, and they arrived quickly. I remember being sponge-bathed early in the morning, but not understanding why, guessing that it was a relaxation tool or perhaps just bath-time on the unit, but I accepted it as a kind, soothing gesture. What I did not know was that my family was waiting for the cardiac catheterization lab to open so that I could be taken in for an angiogram, a video-displayed, radiographic visualization of my heart vessels. I remember lying on a gurney waiting to be taken into the lab. My family members were overwhelmingly sweet and supportive, but their faces reflected such strain and fear. Through the haze of sedation, I was unable to comprehend thoroughly what was happening, to them or to me. I only found out recently that the wait was far from brief, spanning nearly twelve hours.
It is astounding to note that this physical fuzziness is so common. Part of it is intentionally induced by the caregivers, but there is often an ever-present force commanding the patient to withdraw from his or her unwanted, starring role in this grade B, cinema verite, autobiographical film.
My bright, precious, mature, loving, frightened daughter, was about to be called upon to rally and make decisions about my treatment, all the while aware that I could die. Our uniquely close relationship was and is so important to both of us. The mutual love we have always had for each other, born of real affection coupled with her need for me and my intense, maternal feeling for her, was responsible for her incredibly agonizing fear. I found it unbearable to the point of tears, yet I was in too vulnerable a position to help her, perhaps for the first time in her life. This was our first role-reversal.
My mother was immersed in maintaining her stoic veneer, trying to carry herself through an experience that still remains indescribable. We are mutual lifelines, anchors for each other, best friends, and now she had to hold herself together in the face of this life-threatening scenario with me as cause, not resource person. She was gentle and loving, holding my hand, touching my face, but I could feel the apprehension right through her tender touch.
Of course her stoicism belied her real feelings and paved the way to a peculiar side effect: she became unable to take in the information offered by the team, her granddaughter, her son-in-law. This insightful, intelligent, curious woman had turned off to the point that she became "stupid" - her word. No amount of repetition broke through the wall of protection, not for several least days.
Other signs of her distress revealed themselves on several occasions. Families often argue their way through turmoil, with tragedy eliciting both the worst and the best in them. There were times when she was responsible for unwittingly alienating some important visitors, including my brother. Apparently she felt that he was lecturing me, out of his own fear, no doubt, but rather than checking with me, she tried to have him pull away. There is little the patient can do in these family situations without encountering the double-edged sword of hurting one person while protecting another. There was another incident two days later involving my friend's twelve-year-old son who was bouncing on my bed and playing with the controls. She decided that he was causing me damage, despite my telling her that I was happy for the distraction he provided. My friend and source of strength, clarity and wisdom, with whom the saga had actually begun three days previously, witnessed the episode, her role uncertain, her feelings deep. Days later my daughter told me that she was the recipient of this special friend's total support. It was neither the first nor the last time that she would be called upon to capably play this crucial role. Even though my husband tried to comfort my daughter, he was frightened, unaccustomed to hospital protocol, trying to keep his composure. What a complex cast of characters and such love, good intentions and emotional effort.

The Heart of a Woman

This is the central portion of Chapter 3 and speaks for itself, if you have been reading all along. It speaks loudly, with a ring of truth and might help anyone who is in denial in the midst of a terrifying situation. Perhaps it should be entitled: "It's Not Just a Toe, You Know"! Read on... please...

I still did not believe that I had had a heart attack, so there practically seemed to be no point in my being admitted in the first place. No one would advocate this level of denial, but most people have met with it, particularly when dire predictions surface. In any case, within about two hours, my daughter arrived, trying not to look grim with concern in front of me, and I let my annoyance be more demonstrable than any threat at hand. But she had graduated from Mount Sinai Medical School in New York, and was in an arduous four-year residency program in obstetrics and gynecology and just plain knew too much! I would never be able to quell her fears or take away her anticipatory pain. To this day, despite reassurance from top medical people, she feels palpably worried that she could lose me. Tears flow as I write. I understand those fears, having experienced them with numerous scares involving my own mother, with whom I am extremely close. In an effort to fool her and pull her from shock, terror and dismay, I summoned what I thought looked like a real smile, designed to hide my own fear; I feigned an energy that did not exist. Of course I didn’t know that my pallor and quietude were giving away my little secret! I could not bear her natural reactions and so sought to save both of us by not expressing my real feelings. When a cherished family member is disturbed, it may be natural to extend comfort toward him/her, but this is one time that it is perfectly acceptable to put yourself first. The family's energy is operating at full speed in your direction and you need to allow yourself to derive all you can from them to enhance your own recovery. I call this self-ish-ness - the capacity and necessity of taking care of the self, separate from the kind of selfishness that intentionally avoids noticing the needs of others. This is your time and the more self-love you possess the more able you will be to absorb the loving thoughts and gestures of your family and friends. They will cherish the opportunity, for it will limit their feelings of helplessness and increase their ability to provide for your needs during your on-going struggle. My adult daughter's only concern was for me and she would rely on her friends and mine and our family in the interim. All of this was anathema to me in the moment, but inescapably true.
I have no idea how long it was before I was brought to a bed on the telemetry floor, where every patient wears a device that monitors the heart, transmitting information in the form of ECG waves onto a computer screen at the nurses' station. Time loses meaning as all effort is utilized to comprehend or at least begin to absorb your new situation. I was settled in, a new IV in place, under observation, surrounded by mother, daughter, husband and too many thoughts to fit into even the largest tome. This was serious business after all.
By nightfall - this had begun at 1:30 in the afternoon - I had at last accepted that I was not going anywhere. The trip to visit Romania, my husband's native land, had been cancelled. I felt terrible for him, although for the first time in my life I had mysteriously not been looking forward to leaving. He had habitually quipped to everyone we knew that I needed ten minutes to prepare for a vacation: five minutes to jump up and down and five more to pack! Not this time. I was unnaturally unenthusiastic. Even in the midst of our denial, we are more knowing at times like this than we give ourselves credit for, and yet I heard myself seriously suggesting that he try to re-book the trip, postponing it for a few days. I was the only one who thought that this was reality-based, others’ prognostications leaving me annoyed. I was already doing just fine, thank you, and gave no credence to the assumption that hospitalization was even necessary, let alone that it would be protracted. I had not yet become "a patient" and wanted to reach consensus on the likelihood of the test results confirming that I was not in any danger. We would remain packed and all would be well.
I could not have been more mistaken, but this reaction is predominant among sane folks who have not yet resigned themselves to reality, which I believe applies to most of us who are in the throes of such confounding situations.
Part of the standard regimen on telemetry involved having a nitroglycerin patch adhered to my upper chest, designed to reverse or control possible blood vessel constriction, but it induced a severe headache, the most commonly experienced side effect. I complained to an intern who proclaimed that it was "all in my head", that I was "just another hysterical woman" and should calm down because I probably had nothing wrong with me anyway. Well, I knew where the literal pain was, but objected vehemently to the vacuous, accusatory, condescending attitude he conveyed. I wanted to call his supervising physician - and his mother! - to express my consternation, but settled for Tylenol finally administered by a nurse. This was not to be my last encounter with the tall, young, misguided neophyte. Whether because it is easier not to deal with (in)human beings like him or just not a worthy exercise, the idea of summoning the nerve to contend with him, although at a later point, had merit.

Women and Heart Disease: The Heart of a Woman

Here is more of the manuscript... it's strong, but hopefully useful, particularly for women, whose voices are still not loud enough!


Chapter III. The First "Event": Coping With The Initial Reality
My friend's initial response to my desperate call was "You're kidding!", reflecting both her fear and disbelief, but she knew by my voice that there was no question that I was in trouble. She left her job and reached me so quickly that I thought the phone was still attached to her hand when I somehow managed to open the door for her. We arrived in the triage area of a local hospital at breakneck speed. Initially, I was told by the nurse that I was probably fine ("Just indigestion, dear"), and the pain did finally abate. It was a surprisingly strong pain, so focused on the left side of my chest that I could describe it by simply placing three fingers on the very spot from which it emanated. There was no "elephant" and absolutely no other symptoms to report. Parenthetically, I have a family member who recently complained of pain in her right arm and shoulder, and, based on my experiences, sought help and was diagnosed with blockage in a small branch of her LAD. Lesson learned.
My speedy friend owned a hair salon and was literally in the middle of a haircut, so she left me in the presumably competent hands of the staff. I sat on a hard chair, in the midst of the usual variety of ER patients, crying quietly, feeling terribly alone, weak, scared and absolutely ignored. By the time I was actually seen by a physician, anger had taken the place of pain and fear, based in large part on the frustrating, seemingly interminable wait. If I did need care, and I had not yet admitted to that, I certainly was not getting it! Characteristic of emergency rooms and of the mindset that affects even female caregivers, no one seemed to feel that I was a true emergency. I longed for them to be correct, but it was their responsibility to notice that I existed! Never allow yourself to be overlooked and always have someone with you who can provide advocacy for you. My friend had to leave and I was initially too demoralized to assert myself. We are often taught, especially as women, to smile sweetly, wait our turn, consider others. We are labeled aggressive when we attempt to fend for ourselves and admonished for calling attention to our needs. In a medical setting, it is critical to bypass this prevalent attitude (pun intended) to make certain that we receive the best possible care.
Having some knowledge of cardiac enzyme tests, electrocardiograms (ECG's) and other tools of the trade, I announced that I wanted an ECG as a "rule out" device so that I could meet my husband as planned at the airport. My mother and stepfather were picking me up at home and I saw no need to alarm them. Whatever happened, it was over and I wanted out of there, yet another universal theme. No one wants to sit in an ER, particularly alone. Despite my adamant pleas, even in light of their limited attention, I was not going to escape admission.
I relented and gave permission for my husband and parents to be called, but decided to wait to alert my daughter, a physician only two months into her first job. By the time the first contingent arrived, I was a proverbial basket case, at once alone, frightened, filled with disbelief and frustration. I still was not entirely convinced that I belonged where I was. This is a poignant example of insistent denial, improperly paired with the fear that this might well be a major problem. For me, the worst part was knowing that my pain was being dealt to the people who loved me the most. I was told by them then and since that this notion is "ridiculous", but not to me. I was accustomed to being the caregiver, the strong, able one, certainly not the patient, let alone the one who was disrupting the lives of others. For anyone who has encountered these feelings, I can offer a note of consolation: listen to the significant people around you; they are more than likely telling you the truth. Your suffering is affecting them, but they are not holding you responsible. You are not at fault, not for the situation or for their responses. Allow them to dote on you, sit with you, encourage and nourish you, for it is deserved and essential. There will come a time when you will be available to comfort them, but the tables cannot to be turned just yet.
Every patient has valid complaints, often minor, sometimes quite important. Here is one of the most irritating of the many incidents that unfolded in the ER that afternoon: an EMT (emergency medical technician) trainee search for intravenous (IV) access in the most difficult vein in the arm. He finally managed to insert the line, but his inexperience caused my arm to ache, turn into a veritable rainbow about the circumference of a good-sized peach and definitely rendered me much angrier than before. We all have a true need for competent, sensitive care in a situation like this, and I instead felt like a mauled kitten. I did not, nor could I have expected to know that there is a vessel affectionately called the "intern" vein, a comparative breeze to enter! Stoicism is not a friend: if you want to avoid this unnecessary assault, speak up, insist that the IV team or a more experienced staff person be called in. There is no reason to increase your stress level - I urge you not to take on a "good-guy" role. This is not the time to engage in such niceties. Of course, in the scheme of things, this incident became unimportant, but it set the stage for creating a veritable handbook for coping with a string of similar nonsensical moments to come.