It’s been a long, long time since I’ve posted anything in this blog. I’ve had a lot to say, but not much time to say it! However, for the sake of record-keeping, and to answer some questions my friends and family may have, I felt the need to post some thoughts and facts about my current cardiac situation.
Some brief background is in order: I was born with a defective heart valve. The valves of the heart regulate and control the flow of blood from one chamber of the heart to another, and from the arteries and veins connected to it. I had a bi-cuspid valve, which means it had two little flaps instead of three. The flaps couldn’t close completely, which meant that some blood would leak through when the valve was supposed to be closed. By the way, when you hear your heart thumping, that sound is the closing of the valves, basically. When people listening to my heart, they could hear a slight sighing sound following the thump – that was the leaking blood. This condition is known as a heart murmur, and there are several kinds. Mine was aortic. Since the valve couldn’t close completely, my heart had to work harder to pump my blood, and that strain took a toll.
Ten years ago, my symptoms were such that the doctors decided to replace my bad valve with a metal, mechanical valve. You may have heard of some people getting pig’s heart valves, but they don’t last a long time, and I was only 45. So the mechanical valve was a better, longer lasting option, but there are some consequences – for example, I have to take blood thinners now, and I will for the rest of my life.
In May of 1999 I had open-heart surgery. It was a very traumatic experience in some ways. For one thing, there was a terrible storm that night after the surgery, and several times during the night, while I was still on life support, the power at the hospital went out. I remember waking to see hospital personnel surrounding me, shouting orders, holding flashlights, waiting for the emergency generators to kick in. This happened at least twice – maybe three times. It’s hard to remember for sure.
In any case, after the valve was replaced, my heart would not resume beating on its own. The doctors were not really sure why this happened. In fact, for all they know about the workings of our bodies, there are still many mysteries to be solved, and the source of the heart beat is still unknown. When they realized that my heart wasn’t going to start beating, they put me on a temporary, external pacemaker. This was a device that was connected to my heart through wires coming out of my stomach. The pacemaker was about the size of a TV remote or small camera, and I wore it suspended on a string around my neck. The idea was that maybe my heart would regain its normal beating on its own in due time, but after several days it became clear that I would have to get a permanent pacemaker.
After recovery, everything went really well. I attended cardiac rehab classes for 6 weeks, and eventually resumed my normal life, in time for the beginning of the next school year in August. Many of my co-workers at the elementary school never even knew that I had undergone surgery at all, although I did have a pretty wicked-looking scar, which remains to this day.
Fast forward. Last May (2008) they replaced my pacemaker with a newer model. The procedure was a simple day surgery, and my incision healed quickly. Pacemakers are expected to last approximately 10 years, but they didn’t want to take any chances, since I’m completely dependent upon the pacemaker for my heartbeat. In cardio-lingo, that’s known as being “fully paced.” My friend Wes once remarked that he thought it would creep him out to know that his life was totally dependent upon a little electro-mechanical device, but to tell the truth, I hardly ever think about it.
I started having some weird experiences however. On Labor Day weekend, 2008, my daughter Erin came home from college for a weekend visit. That Friday night we decided to order pizza and watch a DVD. As I sat at the computer, placing the pizza order online, I started to feel very strange. It seemed to me that my heart was racing, as though I had just climbed a long flight of stairs. I had trouble breathing, and trouble concentrating. It seemed as though my vision was graying out. I wasn’t blacking out, but I was finding it difficult to concentrate and focus. An inadequate but potentially helpful analogy is what it’s like when I’m using my laptop (like I’m doing now) and the power cord slips loose. I don’t loose the screen, but it dims perceptibly, and the responsed time is slower. That’s kind of how it felt.
But the main sensation was of a heaviness on my chest and a pounding, pounding heart that I could feel on my breastbone, in my ribs and collar bones, and up into my neck. I didn’t say anything, but Erin noticed that I had stopped typing or even looking at the computer screen, and when she asked me what was wrong, I couldn’t give her a clear response.
So Erin called 911, and soon an ambulance and paramedics were at my front door. The sensation had eased by then. Erin had helped me to the living room, and I was trying to relax in the recliner when the emergency crew arrived. They did a quick check, ran an EKG, and everything looked normal. As one of the EMTs pointed out, the fact that I was fully paced meant that they would not be able to see any stress or significant problem with my heart. However, they took me to the hospital for observation.
I have already recorded those experiences in a previous blog. See “Thoughts from the hospital.” After my hospital visit, I was required to undergo a nuclear stress test, which I have also described in a previous post – see “They Tried to Kill Me.” Which is what it felt like. The tests were inconclusive.
In the ensuing months, I had a few more incidences of racing, pounding heartbeats that came out of nowhere and left as suddenly as they had come. Because the doctors told me that it was impossible to have such a thing happen, I didn’t tell anyone. What would be the point? When I had my regularly-scheduled pacemaker check in December, I tried to talk to my cardiologist about it, but got nowhere. His attitude was dismissive and patronizing, which greatly irritated me.
I know that my doctor, like many other medical specialists, have certainly had experiences that would cause them to be jaded. I’m sure that he looked at me and saw a middle-aged woman with non-specific, mysterious, and to his mind, impossible symptoms, and I’m sure he assumed that I was lonely and looking for attention. Perhaps I was hoping to get my children to pay more attention to me. Or perhaps I was just looking for some drama in my life. He has probably seen his share of patients like that.
But I’m not one of those. I don’t need drama in my life – I have quite enough going on as it is, thank you very much. I’m delighted that my children have found their own lives and that they’re pursuing their dreams. I’m pursuing mine, as well. I have an interesting career, lots of good friends, a fun social life of sorts, and challenging and worthwhile pursuits of many kinds. I tried to explain some of this to my cardiologist, but he wouldn’t really give me the chance.
In early January, I was sitting at my desk in my office, typing an email, when I began to have another episode of heart pounding. I thought, as much as I could put logical thoughts together, that it would be a good opportunity to get some corroborating evidence. So I emailed my assistant and the library secretary and asked if either of them could take a pulse. As you can see, I was able to think somewhat clearly, in spite of the fact that I felt like I might pass out at any moment. They both came in and tried, but I have a very hard pulse to find. Even seasoned nurses sometimes can’t find my pulse.
So they called the campus nurse, who is also a nurse-practitioner. She came to my office right away and was alarmed by what she was able to perceive. She took my blood pressure, which was slightly elevated, but while listening to my pulse with the stethoscope at my inner arm, she heard my heart beat stop, start, race, pause, etc. It was, in her words, extremely erratic. Then she used the fingertip monitor to check the oxygenation of my blood, which was fine, but the fingertip monitor also showed my pulse rate at 138 beats per minute. It’s normally around 64 to 72 at the most. After talking to me for a few more minutes, she used the stethoscope to listen to my heart, and by then, it was a nice, steady 62 beats per minute. She was deeply concernd by this contradictory evidence, and urged me to call my cardiologist and set up another appointment.
The following week, I went to see my regular family doctor. While I was there, I told him about my recent experience. He suggested that perhaps I needed to see a different doctor and get a second opinion, and he recommended a female cardiologist who would be much less likely to dismiss my symptoms as nothing but a mere panic attack (which is what my original cardiologist called it).
So I set up an appointment with the femme-doc. I really liked her, especially because she listened to me carefully and was willing to consider that these episodes were really happening, even though they were “theoretically” impossible. As a first step, she had me wear a cardio monitor for a month. It has been three weeks now, and I’m ready for this to be over!
The monitor is a little black plastic box, about the size of a small tape recorder. A plug on the top connects to two wires, which run to two contact points. The wires look kind of like a funky set of ear buds, one black and one white. They attach to sticky pads, which stick to my skin. I wear one on my right shoulder, and the other at the bottom of my rib cage on the left. The adhesive on the sticky pads irritates my skin, and the left-over adhesive is hard to remove. I can only take it off when I’m in the shower – as soon as I get dry, I replace the sticky pads and hook everything up again.
The monitor itself is not big or heavy, but it’s awkward and cumbersome. The nurse said that most men just pass the wires through the front of their shirts and wear the monitor in their breast pocket. Or they snap the carrier onto their belt. But I don’t wear shirts with pockets, and I don’t wear belts, so it’s been hard for me to figure out what to do with it. I finally settled on clipping it to the center of my bra, but it’s not very comfortable, and it makes a weird lump under my clothes.
My greatest fear was that I would wear the monitor all month and nothing would happen – it would all be useless. But I have had three episodes. On Feb 12, I had a fairly severe episode just after I had settled in bed. On Feb 20, I had a very severe episode at work, while I was sitting at my desk typing an email. On Feb 23, I had a mild episode, again happening right after I had settled in to go to sleep. I pressed the button to record my pulse, or whatever it is that the monitor is actually monitoring, when the incidents occurred.
After making a recording, you have to call the company that supplies the monitors. You give them some information, then you hold the monitor next to the mouthpiece of the phone and press a button to transmit the recording. It sounds the same as a fax machine – squeals and static.
I hope that they were able to get good readings, and that the recordings will shed some light on what’s going on. My biggest fear now is that I’ll go back to the doctor and she’ll say that the monitor did not detect anything amiss. Then she’ll think it’s all in my head, too, and I’ll be back to square one.
I have to wear the monitor until next Tuesday, Mar 3. Then I will pack it up and send it back to the company. They will prepare a report for my doctor. I’ll see her on Mar 11. Maybe she’ll be able to figure out what’s going on.