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!