Women and Heart Disease" The Heart of a Woman

Chapter 6 of the saga is long, but if I have anyone's attention, hopefully you won't mind. In re-reading it, and somewhat re-living it, my hope is that someone out there will note something that hits close to home. I so long for my words, thoughts, feelings and experiences to be of use to women, families, friends, so please read on...

The Next Shock: Fear, Weakness And The Beginning Of Hope

Once again, I had no way of knowing what was in store for us all.
On only the second of those two slow motion days following the much-awaited and applauded release from the hospital, I awoke at five in the morning, unable to go back to sleep and feeling just plain peculiar. Within a few minutes, I began to feel cold, sweaty and weaker by far than I had been. Imitating the hospital protocol, I took a sleeping pill, an avoidance mechanism but a necessary evil given the situation. Perhaps sleep would provide the solace we all seek when we cannot seem to get a handle on our emotions.
No more than five minutes later, a pain began, this time in my back, at about the level of my shoulder blade, different from and substantially more severe than the second attack. I had heard that the pain of an MI could occur in the back only, but it was still surprising, to put it mildly; it was only my immediate history and experience that could have signaled that this was not muscle strain or merely the result of sleeping in a bad position. Again, lack of information particularly for women could have caused a delay in seeking medical attention. For me, denial was impossible; I knew that this would be a command performance. I did what most women probably would have done: awakened my husband and dressed in loose, comfortable clothing, anticipating being driven to the hospital. Next, I visited the bathroom to run a brush through my hair, perhaps adding lipstick so that I would not appear too pale. When I looked in the mirror, my eyes bulged and I gasped at my appearance: I was actually whiter than a sheet, an expression I had never before taken literally and a shocking state. My reflection was barely recognizable. The feelings elicited from what may not sound calamitous to anyone who cannot empathize were beyond dramatic and were frightfully disturbing.
I managed to wake my mother to mobilize her, and her first, half-awake response was to ask me what time it was. The digital clock read 5:17; it would be years before she stopped awakening at that very time every morning. Like insomniacs who are advised not to glance at the clock when they awaken during the night, I wished I had not implanted that seed.
In the midst of this harrowing occurrence, my incredibly organized mother actually spotted my discharge papers and had the wherewithal to bring them along. Cognizant that we would not be driving anywhere, and having begun to learn that not being in control had its advantages, I simply dropped onto the bed and we called EMS (the amazing Emergency Medical Service). My husband was too upset to give the operator our address with any clarity, so I had to summon the energy to take over this seemingly simple task. The pain was beyond the usual scale of one to ten, so when more than seven minutes went by, we called again and were told that the ambulance's engine had failed. They were giving the call to an ALS team - the Advanced Life Support service we should have asked for in the first place. We were all understandably distraught, but this time they arrived quickly and they were wonderful. I had had only one ambulance adventure prior to this, following an automobile accident in which I suffered rather minor injuries, but major anxiety. I was fine until I was placed into the rear of the car and asked my name and then my date of birth. I gave my name and then drew a complete blank on my birthday. It is unpredictable what panic causes, so this time I was determined to remain calm, even in the face of escalating pain and, once again, great concern for Mom and husband. The two professionals worked on me quickly but calmly, attaching me to an ECG unit, deftly starting an IV line, giving me aspirin, asking pertinent questions. I was not 100% there, partly because I had intentionally detached myself and partly due to my condition. The subject of lack of control kept re-surfacing. Of all things, my most vivid memory consists of being wheeled down the hallway of my apartment building, leaning back in a wheelchair with my head resting on the soft, reliable, warm ample belly of one of the paramedics! The comfort I felt from that moment will always stay with me. I kept my eyes closed for most of the time I was being loaded into the ambulance, vaguely aware of voices around me. I had a degree of confidence in my rescuers that allowed me to maintain myself all the way to the hospital. It was a revelation once again that I could actually benefit by not being in control, still a new experience for me that was beginning to take root with less resistance and more aptitude.
A note of uncanny irony: about six months after the ambulance ride, I found myself obsessed with the sights and sounds of emergency vehicles. I could not shake it, so I just let it flow for about a week or so. Having worked with clients who were prone to anxiety attacks, I knew the importance of allowing the experience to wash over me. I stopped fighting it and hoped that it would somehow turn out not to be a stumbling block but rather a precursor to the next level of my emotional recovery. The next week, my mother and daughter and I had scheduled lunch together and as we were leaving the restaurant, two uniformed paramedics arrived to pick up their outgoing order. It was my mother who recognized them; it took me a while, having remembered only two salient points of information: that one was tall and thin and the other much shorter with that sweet belly, and the other the sound of their voices, confident, firm, dear, encouraging. She was right and they remembered that early morning call and were pleased to see me looking healthy, particularly in comparison to our first meeting. I never again had the dramatic emergency vehicle reaction. I had learned another lesson: it is potentially more effective to stand back from ourselves, looking in from the outside, remaining open and observing the messages that come in so many differing forms. Perhaps it was all in the realm of "meant to be"; perhaps I needed to see them again to thank them and reach the kind of closure for which particularly women search.
My husband followed behind the ambulance, our car practically inside theirs, while I was monitored by the paramedic. I felt like I was drifting, searching ambivalently for lucidity, but preferring to give myself over to his expertise. In the face of utter helplessness and lack of options, I was putting into practice the life lesson that was in its infancy. I only vaguely recall the shift from car to ER cubicle and the pain was intractable. The first three doses of morphine did not touch it. I knew that terror could worsen the situation, so I began concentrating on the Lamaze style breathing I learned as preparation for childbirth decades prior. I used whatever mental energy I could summon to help my body control the pain. I had no idea that my mother was right there next to me in the ambulance, listening attentively to the EMT's (Emergency Medical Technician’s) report to the hospital, block by block. I was determined to relax physically and draw from the modicum of strength I could muster to take myself away from any negativity that could hamper my chances of survival. I could not take responsibility for any more than that - it was both the most and the least that I could do. Modern medicine would have to provide the rest.
If my recollections are correct, I believe that the second trip to the cath lab (short for catheterization laboratory, where the angiography team works) came quickly. This time, my daughter did not have to witness the emergency: she had gone to Florida with a close friend for a much-needed vacation, at my insistence, despite her trepidation, but it was to be interrupted that very day, stirring with familiarity the unnecessary but not unexpected feelings of guilt and helplessness.
Now I was in for the same procedure, balloon angioplasty but with two more stents added, same essential vessel, same problem. What had happened that caused this even more damaging crisis? Apparently, though not yet medically proven, the vessel had been nicked and the original stent not placed far enough into the area of blockage to hold it open. True to their job description, platelets had surrounded the area of the wound and clotted over the entry point, re-occluding the narrowed artery, not unheard of, but not common either, after performing this sophisticated yet imperfect medical maneuver.
While we waited for the room and crew to be readied, I found myself drifting again, hearing the concerned voices around me, and, for the first time, wondering if I could endure this. I found myself thinking that it might be too difficult, that it would be easier to just let go, that the degree of pain was a sign that I might not recover this time. Warm tears flowed down my pale cheeks; an indescribable level of fatigue enveloped me. It was analogous to a meditative state, but with the added feature of deep despair. I was in such pain and had a sense that I could not be saved from the sinking ship that was my unreliable body. No lifeboats, no ability to talk myself through, no energy to fight back. Then an odd sense of calm and peace began to take root: might it be a viable alternative to just keep my eyes closed and stop working so hard? I had read that people who are dying - or choose to die - experience an astounding level of relief from pain, feelings, thoughts. Was I going to succumb this time? Did I have a say in my own destiny? This whole episode probably spanned only a minute at most when suddenly thoughts of my daughter filled my mind. Where was my will, my strength? How could I just give in, give up? How selfish was I that I could allow myself to even think this way? I had to fight, kick myself out of submission and evoke the family tradition: it was time for operation bootstraps! I recall making a conscious decision to beat the odds, whatever they were. I was not going to opt out, not in this age of cardiac miracles, not with everyone who needed me and whom I loved standing by. This was a turning point that buoyed me in spite of what was happening to and around me. I think that it was both humbling and completely lacking in humility, a kind of ambivalent thinking that helped rational thought win over the possibility of disaster.
I was in and out of the lab fairly quickly this time, but in miserable shape physically and emotionally. There was one mishap: after an angiogram, when the method the interventional cardiology team does not use a "plug" to stop the bleeding from the groin, it is necessary for the patient to remain prone for six to eight hours to avoid the possibility of hemorrhage from the insertion site of the catheter. I was reminded not to try to change from that position by the nurses and watched closely to insure that I cooperated. I had no interest in moving at all, so my compliance was a given. However, my assigned cardiologist approached the stretcher soon after the procedure, accompanied by a resident. Anyone who has been in a teaching hospital will know that these visits are common, expected and important to the training of the house staff. Unfortunately, my doctor then sat me up (I was not a willing or able participant), and began listening to my “unusual” heart sounds, instructing the resident to do the same. I recall his quizzing the resident, checking to see if he had heard "all three sounds". Apparently this was medically instructive, but within a few moments of his walking away, I suddenly felt wet. I alerted the nurses, who found me bleeding profusely from my groin and began the arduous process of stopping the flow. The second procedure had been performed using the right side of my groin, since the left had been "plugged" the week before. They do not dare to plug the second side just in case they need access if anything goes wrong, so there was nothing in place but gauze and a sandbag weight to stop the hemorrhage. It took about thirty minutes or so of direct pressure to stop the bleeding and was not only horrifying, but also painful. The nurses were appalled. The fallout included blood loss that nearly necessitated a transfusion; weakness; and rapid heartbeat (tachycardia), yet another risk to my vulnerable heart. I was totally aware of what had happened, as was one particular nurse who had exclaimed: "He sat her up!" This was in the category of “egregious medical error”, that moment in time when a rewind button would be such a convenience! Too exhausted from the ordeal to express my anger and dismay, I suffered through the immediate aftermath quietly, but made a bold, italicized mental note for future reference. Of course, it is not always possible to have a guard/rescuer standing by, but had that person been in place, I would not have had to suffer so unnecessarily.
Meanwhile, back in the CCU, foggy, despairing, humorless, both dreading and anxious for my daughter's return from Florida, my mind was whirling: what would happen next? What condition would she have to see me in when she arrived? I felt panicky, pathetic, self-pitying and shaken, with an even higher level of fear than that of the initial week. No amount of support, no words of hope could take hold. I did not dare to think that this time all would be well; having three stents somehow provided even less reassurance. Logically, if one failed, maybe this was not the way to go. With no long term research to rely on, I could not be convinced that I was in the clear. In all of these reactions there is a common thread: nagging worry shares the stage with concern for loved ones, but we cannot expect to rescue ourselves let alone anyone else from the choke hold of such epic “events”.
Astonished by the level of weakness to which my body had been reduced, and in the face of ever-growing disturbance about the care I was receiving, I was inconsolable. I was unable to summon my humor, with complex, diverse, unwelcome emotions just at the surface. What timing: my wonderful daughter had just arrived and was trying valiantly to be at once positive, professional, caring, pro-active, loving and comforting. We were both immersed in a massive cover up of our natural feeling of agonizing fear. It was a self-centered time for me and I was simply too exhausted to lift anyone else's spirits. Everyone shared my desperation; as would be expected, optimism was a commodity in great demand but small supply.
Could we dare to relax, risking the thought that all would be well in the hallowed halls of modern medicine? I was aware of a growing anger based on helplessness and fear of the unknown, both justified and provocative. The enormous strength of these feelings was completely overwhelming. Placation was hardly useful, but the only tool that seemed available. During the day, I usually had someone special with me, but the nights were intensely difficult. When I should have been sleeping, all I could do was ruminate about what had happened to me and what might recur. Locked in denial, darkness and solitude taunted me, threatening to interrupt my clumsy attempts to keep the curtain down on my intrusive thoughts of catastrophe. Just when I needed to soothe myself and could not, a male nurse appeared. He had the willingness and kindness to talk to me, reassure me, lure me into a calmer state, but I still had to rely on rather large doses of medication to induce even brief sleep. It is crucial to ask for help during these moments and I had waited too long. His presence did help to break the profound sadness permeating my unchosen world; it was pervading my thoughts in the silent room. I was losing myself in the uncertainty of my own future. I suppose we all have a right to feel sorry for ourselves, but for me the greatest suffering continued to emanate from the pain all of this was inflicting on my family and close friends. It amazes me that my best friend "Logic" and I seemed to have parted ways. There was little my intellect could provide. Actually, when I did try to think my way through the most awkward moments, I found I was convincing myself that I was indeed dealing with the unknown and that even in the best and most knowledgeable hands, I was on medically dangerous turf. This mental process was hardly my grandest achievement, slanted as it was in a negative direction. When reality hits, intellect ducks out of the way and the irrationality of emotion steps in. It would not remove itself from my midst, its honesty and insistence overpowering me. Operation bootstraps? I lacked even a thin thread, insufficient to rouse me into rationality. Even that one sweet nurse was more of a distraction than a confidence booster. The fact was that no one could possibly know what would happen during those CCU days and no one could look into the future and make any promises. A working crystal ball was on my wish list; "time will tell" was unacceptable; patience was worn already and I was only a matter of days into the journey.
Each little step after the first two days following catheterization number two was supposedly monumental. I could move to a chair unassisted, brush my teeth, but most of the simplest activities were unfathomably tiring, reminders of my "condition". I was unable to wash my own hair and showering was impossible, since removing the monitor was forbidden. I could hear my closest friends’ homilies: "Don't become the disease", "One moment at a time", "Don't set up scenarios - go with it and be positive". There was nothing wrong with anything that was said, but simple truths uttered into a deaf person's ears just do not penetrate. What was happening to this positive thinking individual who doled out advice in the worst of situations to such a vast array of people? Why was I not able to begin to "heal myself"? How could I allow this helplessness to continue and have no command over it? How could I accept it, even temporarily?
I believe that my questions echo those of so many heart patients. I was taught to fight the battles of my life, not fold up under pressure. I could not afford to lose this one. I always had my network of supporters, good listeners, kind, loving, caring, patient, but this new deal was going to be for forever? I rejected that concept out of hand.
One couple with whom I had been close but circumstantially had not seen in months came to visit. She rubbed my feet - Debbie was a dancer who for some reason thought they were terrific, although I was no dancer, unless you happened to have seen me at six in "Glow Little Glow Worm"! She was looking at me warmly, but with that same fear in her eyes that I now recognized in everyone around me. No one can save us when all thoughts are based on prevailing, ominous threats. By the time they left, I was too exhausted to hold my head up but too stubborn to allow sleep to intervene. Maybe if I stayed awake, I could reacquaint myself with my more natural, familiar ways of thinking. It did help to have certain people with me and it was therefore hard to let them go, yet almost harder to see the pain in their faces. Visitors are so important, especially when carefully selected, as is your right and responsibility. Saying "no" can be difficult but is essential. Surrounding yourself with positive, caring, pleasant people adds to your ability to filter your most frightening feelings and shore up your temporarily limited energy.
At some point in time, an adorable, kind young woman who worked in my friend's salon came to manicure my nails. What a treat! These are the moments when life's little treasures peek out of the corner of your mind that you barely know exists, and make you grin. Dawn was pleasant, conversational, professional and she brought me lovely flowers! I learned later that she despised hospitals and was terrified at the thought of coming to an intensive care unit. She never let on and I will be forever appreciative of her.
Every day gave way to those long, terrible nights and every morning tried my faltering patience. The inner pressure to drag myself out of bed made me feel torn: was I trying too hard, possibly causing a setback? What was too much and what would be just right? There are no answers, so why in the world would you expect yourself to know them? There is no course you can master, no wise tutor to guide you. You will probably find yourself trying to muster the strength to act-as-if, as I wanted to for my daughter's benefit. Interestingly, I had not sung the ever-popular "why me" tune, maybe because I had not yet accepted that I was really there. This may seem peculiar if you have not had similar experiences, but there was a fine line on the map leading to truth that I just would not cross. Yes, that was me in the CCU, but I could hear the moans of other patients and knew that someone had actually died the day before and that could never have anything to do with me. It reminded me of the out-of-body experiences I had read about. You see, I was not in the right place; I was too healthy and did not belong. I clung to that notion throughout the five-day stint, pleading to be transferred to telemetry, or, better yet, sent back home. My family members discussed my transfer, too, but to another hospital, not to the comfort of home. On the one hand, I was frightened of what had apparently happened to me - again - and on the other I refused to comprehend that I was the subject of such ludicrous discussion! Never had I been so blind and it was not self-protection or even ignorance. I have come to believe that these reactions are quite universal. In the face of the omnipresent weakness, the only thing that belied my denial was the constant beeping of the monitors, the IV lines and the medication I was being fed. All this for me? Then I would spend a moment watching the monitor and would see concretely that it really was my heart rate that was high and my pressure irregular. My husband's gaze was fixed on the numbers. My mother was no longer benumbed, but was sometimes protective to the point of trying to keep others away, urging me to sleep. (Over time, one by one, they made me privy to the unpleasant details I had carefully avoided.)
I cannot tell you that I was ever irritated by what I would previously have termed such an obvious lack of inclusion, since I wasn’t really there... I was not doing much of a job of processing even the spotty information at my disposal. Without such irreplaceable advocates in our midst, I suspect that the outcome of our illnesses would be statistically different.
My daughter was in continuous pursuit of better medical care, the phone at the nurses' station her lifeline. It was not unusual for someone to come to her announcing that Doctor So-and-So was returning Kim's call. She was exactly what we all need: pro-active, authoritative, knowledgeable, feisty and sweet, and remarkably helpful. Plagued by the fear of losing me, she propelled herself to be at her best, but she was not made of stone. She allowed her feelings of sadness, concern and fear to rise to the surface when she was alone with my husband, who did try to soothe her, and particularly with one of my closest friends, who was strong for her and encouraged her to express herself freely, no holds barred. My own attempts at reassurance probably felt empty to her. I still knew too little and she was acquiring greater knowledge by the hour.
I suppose I should have felt secure, between the state-of-the-art equipment and my retinue of supporters, but I felt awful physically, weakened and useless and was trying to will myself not to slip into the depths of depression prowling the corridors of my shadowy mind. Depression can cause heart attacks and is also common in the aftermath. The general medical thinking is that recognizing the onset beforehand can be preventative and that treatment, if indicated afterward, should be taken seriously. Medication and/or group, family or individual psychotherapy should be considered, preferably before the depression gains a foothold. My knowledge would not provide immunity, especially months later. I, too, would eventually have to acknowledge my own need. I would also have to dispense at least temporarily with control, replacing it with hope, trust, respect and belief in the people around me. What a phenomenal opportunity for growth…
At this point, the decision to transfer me to telemetry implied imminent release from the hospital, sustaining me and allowing me the freedom to interact with staff and even fellow patients, entrée into a more "normal" world. I still could barely traverse the hallway, but with encouragement and pacing, my endurance increased, if nominally. My impatience grew almost absurdly, but provided good motivation and sheltered me from the depression that I sensed threatened to overtake me. My husband remained a regular visitor but rarely stayed for long periods. My mother was in the room literally from morning to night, which I hope was even more helpful to her than for me, not easily assessed even now. Seldom is anything all one way, totally consistent or without a down side. While the presence of a trusted ally adds security, it can be overwhelming to never be alone. I distinctly remember wishing that I could awaken alone, without fear, even while fully aware that her presence was essential and exceedingly advantageous.
On the morning of my release two days later, a resident was given the chore of discharging me, having prepared a long list of instructions, including my medication schedule. It's ironic that I was comfortable being administered myriad pills four times a day with no responsibility for remembering which was which or when I took each one, another feature of my recently acquired gift of voluntarily, consciously relinquishing control. Now I was eerily disquieted by the thought of having to know what to do on my own. I guess I could not fail to notice how fuzzy I was, so I outlined what I thought would serve as a simplified dosing schedule and asked the resident to refine it and write it up for me. He seemed annoyed by the task, but I was insistent that it was a necessity, particularly in light of my resistance, qualms and fear of becoming confused and therefore risking unintentional non-compliance. He got it. This was another of those times when self-advocacy was so useful.
I had reached the last lap: they had called for a wheelchair to bring me down the long corridor, into the elevator and to our car. I still had the plastic needle in my hand from the IV, although I had repeatedly asked the nurse to remove it, but now she was on a break. Her fill-in finally arrived while I was completing my packing - it's amazing how much junk accumulates - and within no time I was bandaided and ready – or so I thought. So where was the wheelchair? After nearly twenty more minutes, a nurse offered to walk me downstairs! I felt absolutely courageous, but by the time I reached my waiting husband, I was near tears from the ensuing fatigue. I felt like a failure, unable to make my way to the finish line without needing to drop into the car as if I had just attempted a mini-marathon. You may wonder why I would use a word like "failure" in light of my "success", defined as survival and ultimate liberation from the hospital. It is unimaginably simple to "fail" to recognize your own tortoise-like progress. It is based equally on lack of experience, of ignorance, not to know what expectations are realistic and which are not, so you whine that you are so tired and then feel disappointed in yourself for forgetting that you are alive! The concept of failure is destructive, sapping energy needed to climb the long hill to the summit of recovery. It is reasonable to feel lost, uncertain, concerned, impatient; yet it is counterproductive to decide you have failed when you have barely had enough time to absorb that survival is in large part your personal success.
About four minutes into the eight minute trip home, I realized that my hand hurt. I lifted the bandaid, and there was the little plastic catheter, still in the vein! I told my husband not to be alarmed, it was not heart-related, but I did need him to pull over. I retrieved a tissue from the glove compartment, quickly pulled the catheter out of my hand and initiated direct pressure to stop the rather profuse bleeding. Blood thinners work, that’s for sure, but so does basic first aid. I was actually accustomed to these snafus by now (situation normal, all fouled up - it's a military term!), so I was almost matter-of-fact about it. I did call the floor and speak to the supervisor, who supposedly was committed to reprimanding the overworked, forgetful nurse.
When we reached home, I was thrilled that no one was around to witness my return. I was weak-kneed, inexpressibly tired and could not wait to get into bed! Was acceptance just around the corner? Of course not…