Thursday, October 29, 2009

Welcome back... or, for first-timers, please read from the bottom up!
"Home to Stay" continues, with more experiences and more possibilities to thrive...

You will notice that I consistently extol the virtues of having a network of supportive people around you. I am aware that not everyone has such a "team", in which case the time has come to join a support group, whether social or therapeutic, or perhaps begin with a counselor, psychologist or other professional with whom you can share your innermost feelings and fears. No one should have to endure this saga alone. With all my natural strength, positive attitudes, knowledge and training, I needed every moment of advice and solace I sought and still do. Please be neither embarrassed by nor avoidant of the level or types of need fulfillment you are experiencing. As a survivor seeking ways of thriving, you are entitled to whatever services your community has to offer.
The next ten-day period would be most eventful: I would see my internist, who was the Executive Director of Mount Sinai's Women's Health Center, with whom I had a wonderful relationship; don a holter monitor which would record every heart beat for a full twenty-four hours; and return to the cardiologist for yet more news.
The visit to my internist, with whom I had only spoken since heart attack numbers one and two, began with greeting each other with a long hug. I was armed as was my custom with a three-by-five card filled with questions, an excellent shortcut and the best way I know of to insure that no matter what time constraints the doctor may have, he or she has to respect your completing that list. It also helps you to focus without relying on your memory, so that you avoid returning home and only then realizing what you forgot to mention. She had been genuinely taken aback by the news and was filled with endearing well wishes. She agreed to serve as the nucleus of my growing army of physicians and supporters, all test results to be sent to her office and any modifications duly noted on my chart. I advocate establishing this system as a simplifier, a sort of centralized catalogue of information. There was nothing to be added at this time but she did reassure me that the healing would continue and there was a chance that some of the scarring would resolve, enabling my heart to work more efficiently. She is also a hematologist and would handle monitoring the effect of the blood thinners, pivotal to preventing further incidents. She went so far as to imply that I would soon have even more at my disposal than I knew in the arsenal of treatment. I needed the details of that alluring hypothesis to wait until I was ready to avail myself of whatever she had in mind. It is not helpful to have a carrot held so far from your reach that the effect is actually negative. I was dumfounded by my ability to not know every conceivable detail. All I wanted was the magic wand response that every patient not-so-secretly hopes for, and I am a slow healer, so time was both on my side and a tease. I longed to hear sentiments like "this will not affect your life span", "you can expect to return to life as usual shortly", "you have been through the worst of it already". I knew rationally that these would be nothing more than absurdly scripted phrases, too empty to serve their purpose.
I think the most gratifying question-and-answer session I have had to date took place with her that day:
"I want to be able to ignore all these little twinges and peculiarities instead of being on red alert so frequently".
"Go ahead and do just that!", she replied. Music to my ears, but with symphonic complexity and not to be taken too literally…
The holter monitor records every heartbeat for twenty-four hours: the results were dismaying. During one, half-hour period between two and two-thirty in the morning, while sound asleep, I had had fifty-two extra beats. There were other "hot spots", too, but this was most alarming. For now it meant taking a slightly higher dose of one of the prescriptions, but was not described as foreboding. According to the cardiologist, with whom I felt comfortable and secure, I was on the right track. A full month finally had passed, but we would not know how well the stents were working for another five. It would be difficult to wait that long to hear some good news, but "positivity" was an ally.
I was walking every day, though never alone, once venturing by car with my husband to a nearby pretty park with a pond to fulfill my one-block hike. I also decided not to wait any longer to return to work, since I have a home office. I called some of my clients and scheduled a few sessions, which was a good distraction and served its purpose - and assuaged some of the growing guilt of "abandoning" them. On balance, it was more difficult than I could have imagined, beckoning me to concentrate intensely, but well worth the result of returning me to the familiar role of giver. If your situation is similar, and your doctor concurs, I would return to a reasonable work schedule as soon as possible. It can have an enlivening effect.
Still plagued by any strange sensation or irregular heart beat, particularly at night when reactions are heightened, I was frequently panic stricken, wondering if number four was lurking in my midst. There was one moment that I had a stabbing pain I tried desperately to ignore, but the gig was up when my friend called serendipitously, just to check in, and basically ordered me to report to the cardiologist, even though it was Saturday night. What with malpractice suits skulking in the foreground of most physicians' minds, I was afraid I would be told to come to the emergency room, not exactly my favorite destination. Instead, the head of the department happened to be on call and had no qualms about telling me that signs of recovery and healing take many forms, not all pleasant, but this did not seem ominous to her. If she could express such confidence, it made sense to accept it. Lesson learned: make the call! In this case, it was self-protective, non-alarmist and positive.
Someone had forgotten that ribbon you're supposed to break through at the finish line, but no matter; this was my first solo trek, and, bottom line, I had arrived!
Avid about regular mammography and breast sonography, I had added that to an already long day. In general, a somewhat unpleasant, but no-big-deal event - there's that word again - it elicited my vulnerability, particularly in light of the soreness on the side of my chest which could have been mimicking cysts or... I found myself in tears while lying on the table being examined by a physician I had met just once. I explained the circumstances of the past month that led to my hyper-emotional response and she was sympathetic. I felt like a little kid at the pediatrician's office, immersed in self-pity and probably baseless fear, Pavlovian perhaps, and therefore unavoidable. The mere thought of receiving more news to process was paralyzing. Of course, I was fine, just a little unnecessary squeamishness, a perceived lapse in coping suitably. I was groping for strength and was hardly proud to be such an obvious wreck, explicable but still unsettling, another reminder of the arduous struggle that actually had just begun. It is so important to remind yourself that it is human and expected that you will have moments that tap into your natural apprehension and cause you to react, sometimes even over-react. I wish I had recognized and befriended it as acceptable and permissible, allowing me to be more intentional and logical about not over-scheduling my day. It was probably a mistake to have gone for the test alone, but I had not properly judged my own need, a common error. My physical healing would be inexorably linked to my level of psychological acceptance and the fight would be arduous. Seizing the immense opportunity for learning from living this apparent nightmare had to be absolutely primary. My surviving had been only the beginning: the gates leading to the ultimate goal of thriving were coming into view. The unraveling of my marriage was unfortunate but not unusual. It also served as an opportunity to change my life, to head in directions I may never have thought possible, to become more self-reliant. In so doing, self-love and hope ultimately replace anger and fear.

Thursday, October 22, 2009

The Heart of a Woman: Women and Heart Disease

Last night was, indeed, an "event": The 2nd Annual Go Red for Women meeting, attended by about 90 people, from a variety of companies, families, backgrounds, with heart disease prevention being the common ground. I was the only "patient" in the group, invited by my cardiologist who chairs the committee. It is a division of the American Heart Association (AHA) and is funded by Macy's, Merck and others. The educational information, mainly specific to women, was spoken about at the podium and viewed on screen in the form of a TV show hosted by Hoda Kotb on Channel 4. The show had aired on a Saturday night, but was not well-publicized. It concisely presented the range of signs and symptoms women present with and used actual womens' "stories" which focused on making good choices that can lead to treatment and prevention of heart disease and related health issues. The statistics are alarming: not only is heart disease the most frequent cause of death of women in America (one every minute), but because knowledge is power, we must be informed! So, here is a portion of the next chapter in my saga, with some - I hope - helpful points on coping with this dis-ease and not only surviving, but THRIVING!

Home to Stay: Merging Encouragement, Caution and Patience

My mother was still my constant companion, providing food, sweetness, solace, conversation and encouragement. It is common to experience a certain degree of insecurity outside the protective hospital environment and I was not immune to that feeling. Not surprisingly, mixed emotions abounded: I was thrilled to have been sprung but could not keep myself from the inevitable "what ifs". Among the many physical effects were palpitations and "extra" heart beats, odd sensations which are insistent and obvious but not dangerous in the absence of angina (chest pain, which I have learned comes in many varieties). In addition, I developed a condition known as costochondritis, an inflammation of bone and cartilage causing constant soreness in the area of the heart near the uppermost ribs, difficult to ameliorate even with strong pain meds, which should have resolved within a month but was to last for several. Turning onto my left side would serve as an unwelcome reminder of past occurrences, alternately causing a peculiar fluttering sensation or pain significant enough to cause apprehensiveness. Short of sleeping with the telephone in my hand, I had no idea what I should be doing, particularly at night. Other than my ever-increasing impatience, I was not faring badly and I just knew that the sooner I could be cleared to do something simple but meaningful, like driving, the sooner I would begin to return to my pre-MI, optimistic state. Although not completely realistic, these urges are potentially commendable. Welcome them if they come, but with a general sense of caution. If you are in the reverse situation, afraid to move around, especially without the "border patrol" provided by the hospital milieu, question first the distinct possibility that you are truly not ready for much activity. Respect the way you feel physically and then try to find a balance between your emotional needs and your body's ability to cooperate.
On the first morning, I was reluctant to overdo anything, but by that evening I was emotionally ready to start small, with the previously simple, daily chores like bed-making. I awoke the next morning excited that I had an activity to start the day! Can you imagine such excitement over bed-making? However, I was stunned that it left me breathing as heavily as if I had just simultaneously moved two pianos! Off to a rough start and admonished by both mother and husband, I would not promise to cease and desist but would compromise by resting between sides. How lame! So what could I do? For one thing, I could not wait to take an actual shower. When I acted on it, I had another rude awakening: I could not hold my arms up long enough to wash my hair and had to do it in small bursts, skipping the conditioner. How dismaying not to be capable of such a routine task, and how typical. I found it impossible to separate what I should be able to do from what I could realistically expect to do. Questions surfaced such as just when would my stamina begin to increase? What would become my norm? I found it useful to write down my questions and frustrations in almost journal form, for later presentation to my doctors or just as an exercise to look back on over time. Progress would come, but neither quickly nor evenly, as is so characteristic in recovery.
The next rude awakening came when a Celine Dion concert was scheduled on television that night. I love music and have a penchant for singing, so I had something to look forward to that would be guaranteed to lift my spirits. I was alone in the bedroom when a favorite song began, but when I attempted to join in, I found that I could not complete even a phrase without a breath and could not hold the long notes. Tears welled in my eyes as I put forth my best effort, but I was unable to really sing. I went into the kitchen where my husband was sitting and reading the paper, and collapsed onto his lap, bawling like a baby. I needed comfort desperately, but he was not able to understand the depths of my despair, a preview of coming attractions of what was left of our once-sweet relationship. I felt stifled, hopeless, damaged. This was probably among my lowest points to date: it was sinking in that this was real and was happening to me. I was a "heart patient". The diagnosis of CAD (Coronary Artery Disease) on the chart bearing my name really applied. Acceptance is both an achievement and a hardship, as you may already know. There was still a level of comprehension I had yet to reach. Maybe I never will be total, and perhaps it is not necessary.
My first doctor's appointment was scheduled for a few days later, but with the same gentleman who had caused the hemorrhage, so I was, logically, ambivalent about seeing him. He knew the case well, so I deferred to his knowledge of my case over my lack of basic trust. In the meanwhile, I experimented prior to the visit so that I could report both my achievements and misgivings. There were moments when I was certain that I could drive at least locally, but with both sides of my groin still healing, that would have to wait. In the apartment, every move I made seemed to negatively affect me. Just being out of bed too long induced the need for a nap. I was struggling with bouts of rapid heart beats (palpitations) and extra beats, strong and out of nowhere, usually momentary but frightening. I was not sure what to pay attention to and report and what to dismiss. It is a gross generalization, I know, but I do think that this is common among all of us in this and similar situations. I felt far too ignorant - and a part of me still wanted to keep it that way!
Within those three days - not my usual three hours - prior to the appointment, all of the unpacking from the vacation not taken was done and organization had returned. My mildly compulsive side was delighted!
Stir crazy, I announced that it was time to make a brief foray into the outside world. Despite thinking I may have been pushing my luck and with a baffling but intriguing yellowish-green light from the doctor, assisted by Mom's understanding and appreciation of my need and urged on by my own feeling of being nominally ready, or at least not foolhardy, off we went! Breathless anticipation prevailed!
We were out for about an hour - drugstore, cleaners, small stores for small steps - and I was nothing less than thrilled. I was also astoundingly exhausted and then took my longest nap to date. It had taken a toll but had bolstered me beautifully.
To this day, I continue to be confounded by the concept of "doing too much". I probably define it poorly, definitely resist it with stubborn fervor and frequently exceed the normative boundaries regularly. For example, I have been "caught" more than once walking backwards on the treadmill in the rehabilitation program I will talk about soon. What the staff considers dangerous I see as different, interesting and good exercise for yet another set of muscles to which I have never been introduced. I'm a psychotherapist, not a physiologist, and I had no concept of how many underserved muscles I own! I don't have the nerve to prescribe my pushing the envelope to anyone else, but it is part of my personality and, well, I have not fallen yet!
The doctor's visit was meant to reassure me, including a walk completely around the hospital corridor with the doctor. I could barely keep up with him, proof of his poor judgement, I felt, and this was supposed to have boosted my confidence? The way I felt afterwards just served to frustrate and annoy me. He instructed me to begin walking half a block a day for a week, doubling my mileage the second week. I was practically embarrassed at this low-level beginning but excited that I had reached the point where I could "exercise". His sample "run" with me was not exactly inspiring, but from nothing to something, plus my own efforts just within stores, there was palpable progress. Small steps …
I hear both complaints and accolades involving physicians from my comrades-in-arms all the time. True to form, I was rapidly running out of patience and rightfully lacking basic trust in this individual, so I devoted some time to finding an alternative. I suppose it would have been easier to just stay with him, and I did have a hard time calling the office to have my records transferred, but I knew that it is essential to put your own needs first. I tried to be casual and positive when speaking to the staff, not wanting to seem overly critical and aware that I wanted not to instill any resistance from them. Admittedly suffering from Oprah's "disease to please", this self-ish-ness is not natural for me but it was time for another round of self-advocacy. I wondered how many people still revere their physicians based on the lore of old and are too reticent to facilitate a necessary change. The process is not easy for those of us who, by dint of current circumstances, feel weak and needy, confused and concerned, but I hope you will listen to that inner voice most of us possess and take care of your self. Let the doctor's inner circle take care of him/her!
From the many recommendations I sifted through, I chose one doctor from my insurance company's network who was greatly respected and set up an appointment for the following week.
Time passed in slow motion, another universal feature of recuperation. Although battling with a combination of resistance and faith, I was taking an array of prescriptions including two different heart medicines, a cholesterol lowering drug, another to prevent clotting, plus one to keep my long-standing thyroid problem in check and had to re-adapt my hormone replacement therapy (HRT) to the new regimen. Recently - or, more to the point, finally - studies are being conducted, revealing that HRT has benefits for women with heart disease. I had consulted with an internist who specialized in clinical nutrition and endocrinology who suggested a list of vitamins and supplements he felt were cardiac protective and then added in a reasonably palatable protein drink. I thought it would be difficult to keep track of just the scripts: when I realized I was taking upwards of twenty-five pills a day, I decided to become more active in assessing whether or not all this was necessary. The battle had only begun, but I was hopeful that there would come a time when changes and deletions could be made. The good news is that within a few months I was able to adjust the dosing schedule so that I only had to take the array of pills and capsules twice a day. I extol the virtues of simplicity and endorse the concept of thinking through your specific situation - with the help of medical personnel - to arrive at methods of easing your own path toward healing. Compliance is essential and your level of participation and understanding in your own care is an excellent route to acceptance.
I became more receptive to learning about the mechanism of the heart just in time for my introduction to the next physician invited into my life. I brought three extra sets of ears with me (mother, stepfather, husband), a highly recommended strategy, and became the recipient of more information than I bargained for! The results of the echocardiogram, basically a revealing sonogram of the workings of the heart, demonstrated exactly what I feared. My ejection fraction had not changed, the ventricular wall motion was almost non-existent and the area of permanent damage covered 30% of the front of the heart. I suppose I would be a better role model if I said "my" heart, but the reality is that I was still not able to fully personalize news like this. No good news, no apparent improvement, but it had, after all, only been three weeks since the last episode, although I would have sworn in court that at least twice that had passed! I learned that it would take six weeks before the first real hints of potential recovery of the heart itself begin to reveal themselves. Patience is one of the tests of inner strength during this trying time. Generally, keeping busy would be the logical way to help time seem to pass more quickly, but when you are essentially exhausted, have difficulty concentrating and are frequently living in a state of fear and fatigue, time can practically stand still. The distractions of your most loquacious fan club members work best!

Saturday, October 17, 2009

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…

Saturday, October 3, 2009

The Heart of a Woman

The days pass by at an astonishing rate, but I'm back with Chapter 5 and appreciative of my readers' interest!

An Unbearably Brief Homecoming: The Emotional Strain

After nearly a full week, which felt like an eternity and was about two days longer than the average stay even for an open heart surgery patient, I was released from captivity. I still had some fluid in my lungs, was not responsive enough to the anti-coagulants most patients receive, and was barely able to walk the length of the corridor, so my eligibility for discharge was questionable.
My mother arranged to stay with me at home, partly because I needed her help and partly to assuage her own fears. If you think you are "lucky" enough to be surrounded by people who truly love you, note Deepak Choprah's definition of "luck": "Opportunity meeting preparation". We generally have no way of knowing when we may need the help I received, but the relationships I had formed, particularly with my family, were opportune preparations.
My own fears were fermenting exponentially, defenses colliding with harsh realities. With my husband back at work most of the time and just "passing by" during the course of the day, Mom's assistance was invaluable, but I was beginning to long for independence, privacy, freedom. It would feel like eons until I could take on these featured roles, and I was already impatient for signs of recovery, while uncannily exhausted and weak. Even the walk from the bedroom to the kitchen was a trek. I assumed that I would improve steadily, but had been duly warned that it would be a protracted process, a long haul.
Another uncanny, yet typical response was that I did not want to be in tune with my body, but did not dare to ignore it - not again. Every time I felt a twinge, not only in my chest but in my arms, hands, back, the inevitable fear returned. Not again, please, not again. The anxiety I felt was typical and recognizable, but somehow we tend to think that we are unique in our reactions. I had always felt the need to be in control in most situations, never knowing that I could potentially not have that control over my very existence. After a lifetime of believing that I could count on control to pave the way to normalcy, learning to give it over was unnatural for me. I would soon discover that rescinding control would become a positive attribute in this unfolding series of experiences, one that will bear further discussion as we move along together.
Eating was a surprising challenge, a necessity, but not pleasurable, since digestion was problematic and often brought what felt like chest pain. The passage of time has provided me with an inner audio taped message: "Yep, there it is again; it's sharp, but will pass, recognize it but don't fear it". It is a simple, useful device that I recommend, since it wards off any sustained, negative thought.
Regardless of how weak I was, I, like so many people, wanted to reduce the level of difficulty I was causing my entourage. For instance, in my quest to protect my mother from every tingle or ache, notwithstanding the precious energy it involved, I often repressed the urge to groan, grimace or remark. Even the minimal exertion of speaking brought difficulty breathing, but I did not want her to know just how hard a time I was having.
Then there was my limited attention span for even the most banal television programs, which left me with no distracting activities. I had no ability to concentrate enough to read even a brief news article and I sensed that I could reach my wit's end quite prematurely. The level of exhaustion was staggering, yet I did not want to sleep. I wanted to be out of bed, to do the unpacking my husband and mother had begun, to reclaim my apartment having been away for a week.
I moved around the room slowly, an apparition compared to my usual speediness. I assumed that if I behaved "as if" normalcy was nearby, it would resurface. I could not help but notice that I barely had the patience to pet our two cats, who of course wanted to sit on my vulnerable chest. I felt unrecognizable to myself and unable to imagine waiting out the recuperative period. Brain fuzzy and body uncooperative, I struggled to sift through the miscellany in the suitcases, opting to put away clothes rather than cosmetics and the usual array of overseas needs - travel iron, converter, that electric element for boiling water (all necessities for Eastern Europe). The task was daunting, borderline ridiculous, involving a climb up to remote closet shelves, with Mom in the background issuing warnings but fully understanding my need to forge ahead.
If this was the post-"MI" (myocardial infarction, synonymous with heart attack) norm, it had better be short-lived. I felt like curling up in a ball and sleeping through this phase, again anathema to my personality. This thing was not going to claim me, I was not going to don a lapel reading "Poor me, I've had a problem". I had an urge to get into the car and go shopping, do errands, return to life before the "incidents". Totally unrealistic, positive yet absurd, premature but comprehensible, I would have to wait it out. If you find yourself nodding your head, you must find familiarity in these sentiments. We all seem to follow a similar course toward recovery, including our amazement at just how difficult it is to tolerate taking mere baby steps.
Just remembering which medications to take when was tough. It was as though my memory, even my intelligence had been affected. Indeed, this was true. Fatigue alone can reduce verbal folks to the level of feeling like blithering idiots! Finding words becomes a weird treasure hunt. Concentration dips to such a low level that conversation is minimized. Communication was my raison d'etre, so when I could not complete a sentence without taking a previously unnecessary breath, I was, so to speak, deflated. My emotions were frayed and I was on the verge of becoming depressed. I was astonished that all of this was happening and did not cope well with having no reserve of energy. I was not interested in learning about ejection fractions, scar tissue, poor wall motion - the medical jargonese left me cold, serving only to heighten my concern. Attempts to comfort me were basically useless and as I lay in bed, which is where I spent the vast majority of my time, I used what little energy I had trying to convince myself that improvement would arrive.
Bear in mind that all of this occurred during a one and a half day period! I had developed an intense distaste for the process in a total of nine days! I had so much to learn...