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The Beginning

My adventure began Jaunary 4, 2009 with extreme fatigue. The next day I had brief episodes of dizziness and nausea. These were relieved by lying down. The episodes continued the next day and included pain in my back left shoulder. I thought I must have some strange GI bug, but after four days, I went to the GP I’d gone to once (my only MD visit in six years).

I saw her nurse practitioner who immediately thought gallbladder but when listening to my abdomen, heard a bruit. She sent my spouse and I immediately to the ER for a CAT scan thinking I had an aortic aneurysm. Cat Scans of head, pelvis and abdomen, two liters of IV fluids, chest xray, EKG later, the ER doc determined I was simply dehydrated and sent us home. The dehydration diagnosis was largely due to the severe drop in BP that occurred when I sat up or stood up.

The dizziness (fainty, not vertigo), nausea and shoulder pain, which now seemed to come all the way through to my chest continued, we returned to the GP two days later. Again we saw the NP who now no longer heard the bruit she’d heard before. She couldn’t explain the symptoms or the mysterious disappearance of the swishing sound. My wonderful spouse pushed until the NP ordered a MRA of the abdominal arteries for the following week.

Before that test however, we went to see a cardiologist who, while not really thinking this was heart related, because of the remote possibility and my family history, ordered more lab work, a cardiac echo and stress test. I had the blood drawn that day but the other tests were scheduled for a couple of weeks later.

A few days later, they called to say my cholesterol was 380 and LDL over 300, calling in a perscriptipon for Crestor. I had the MRA and several days pasted before a call came telling me my left illeac atrtery was completely blocked and the right one severely ocluded. They set up an appointment with a vascular surgeon for later that same day.

He was a wonderful man who in fact no longer did that type of surgery, but he still spent three hours with us explaining PAD (symptoms I’d admittedly ignored) and also called a cardiologist over to see us as well. The cardiologist wanted an echo and stress test, but no treadmill. They both stressed the urgency. I canceled the other tests ordered by the other cardiologist but still had to wait almost a week before they were done.

During the thallium stress test I was told the drug might feel like I was having a heart attack. The first two minutes felt exactly like I’d been feeling, but the next two minutes were much more severe, the pain different. Fortunately,  it only lasts a few minutes. We went home to wait, being told we’d have the results in a day or two. After two days we called and were told the stress test results weren’t back but the echo was normal. By now I knew something was terribly wrong. The episodes of dizziness, nausea, pain and exhaustion were delibilitating, occurring unpredictably several times each day. I was also spending a great deal of this down time searching the internet and was aware now of the mysterious ways heart disease manifests itself in women and how often it is disregarded or misdiagnosed in women. I was only 52 years old, thin and seemingly healthy. But I did smoke and my father had died of a heart attack at 34. My mother’s siblings that had died had all died from heart disease or strokes.

Finally after a week, the cardiologist’s office called and said the stress test was back but not normal, that it showed a small blockage in a small artery off a main artery. The nurse said she really couldn’t explain it; that the doctor would have to talk to me. I asked to come in that day but she said he was out of the office for the next week. I would wait over two weeks to see him.

When we finally saw him, he said I needed a cath and stents right away. No it couldn’t wait two weeks. It was scheduled for about five days later. I felt like a ping pong ball being bounced around. I was having true panic attacks for the first time in my life, especially when I tried to sleep, imagining my chest being sawed open.

I was given the option of a hospital which could do the cath but not surgery if it was needed (he told us those chances were one in a thousand) or we could go to a larger facilty. In all my down time over the preceeding five weeks, I had also researched the hospitals and doctors involved and knew the larger facility was in the top twenty in the country. So that’s where we went early in the morning of Feb. 18th.

My spouse and two daughters were with me. The cath began fine but within just a few minutes I could tell something wasn’t going right. The cardiologist came over and began to tell me they couldn’t put in stents, that I needed a triple bypass. I had to interupt him when incredible chest, throat and jaw pain began. At first we just said “okay” and kept talking. When I again interupted him, he starting shouting orders for aspirin and a nitro drip. Within minutes I was crying and kissing my crying family in the hall before being wheeled into the elevator. The last thing I remember was entering the OR.

Fifteen years ago, my brother had a valve replaced. He always said the surgery was a piece of cake. It was waking up that was hell. I managed to stay stuck on the ventilator for eighteen hours after surgery (maybe from the smoking?). They told my family I wouldn’t have lived another two months.

My wonderful spouse Lisa and my younger daughter never left the hospital. My older daughter had to leave to care for her young sons who she brought to visit on about day four. It would be four weeks before I remembered them being there. The time in the hospital was a blur. My vision seemed like a tunnel. The pain was terrible with only percocet to offset it. I’d had four C Sections, a hysterectomy and kidney surgery, kidney stones, in the past. No experience before compared.

I can’t imagine how folks survive without a doting and attentive family. My short term memory was toast for at least four weeks. Just going to the bathroom was a major event. My first doctor visit was to the cardiologist he seemed to pat me on the head in answer to every question.

When would he fix the illeac arteries? Pat

When would I start cardiac rehab? Pat

Was the pain I still felt normal? Pat

After three weeks I was only taking Motrin for pain, thinking I must just be a wimp. I read about folks who went back to work in four weeks. I still couldn’t take a shower or bath without help. I asked my family the same questions over and over. My memory still was not improved. I had trouble saying what I wanted to say, trouble getting the words out.

When I went for my visit with the surgeon I was told the memory loss and cognitive symptoms were from the anesthesia and would just take a while to go away. I would later read about this online, a condition called “pumphead” even though my surgery was done off pump. Seven weeks after surgery, it’s better, but not normal.

I discovered an on line support group last week and felt a bit like I’d come home. I went to a Mended Hearts group three days ago and while all the people who had had surgery were men, I still felt like maybe I wasn’t being so wimpy after all. The man sitting next to me had a bypass last August and had just returned to work part time.

Since the surgery, I’ve felt so different, and not just physically. I feel as if I’m not the same person. Much of what was important to me matters little at all and so much that didn’t take priority in my life is now all that matters. It’s slowly sinking in that these feeling of change are indeed physical. Life as I knew it is over. It’s all new now.

My tendency to believe how other’s felt was more valid than how I felt has become blarringly obvious. Even more obvious is that I can’t be that way anymore. I typically explained away a person’s rudeness or mean behavior. No more. I gave more than I got and pretended my heart wasn’t breaking when it was. My heart matters and if it doesn’t matter to me, it’s certainly not going to matter to anyone else. I am so grateful my dear Lisa insisted on that MRA. I’d have probably explained away my symptoms until my heart just quit, thinking again I was imagining it or being a wimp.

Yes, as a “young” woman, the medical community did not believe my heart was in trouble. But, I too accept responsibility. I ignored my heart for many years, in so many ways. I’ve been a caregiver all my life. I have four children, I spent over twenty years as a nurse before going into ministry. Putting others first was something I did and wore like a crown.

This blog contains much whining and retelling of this story. It contains also, moments and morsels of profound clarity. This clarity is sometimes disguised as grief. More and more, it contains what I automatically have called rejoining life, when in truth I step timidly into a brand new life. I am grateful for each step, each breath and for you, my witness.

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