The weeks that passed between my diagnosis and my operation were among the hardest days of my life so far. I grew steadily more symptomatic, and the most upsetting part was knowing that feeling worse meant the damage in my heart was getting worse, too.
By the end of December, things had gotten nightmarish.
One of my journal entries from just before Christmas reads,
“Last night was a bad night. Not the first, and probably not the last. Had to wake Mom up because I couldn’t breathe right (feels like wearing an iron corset) and my heart was pounding and I felt like if I fell asleep I would stop breathing. We lay down on the couch and watched Mystery Science Theater 3000 and Now and Then before I finally got so exhausted I could fall asleep.
The other night was worse though . . . Every time I tried to lie down that night I couldn’t breathe and my heart would suddenly hit like a hammer and maybe it was just exhaustion but I started imagining all sorts of terrible things, like that I could actually feel my heart leaking blood and that my entire body was drowning in it.”
It didn’t help that my body had pretty bad timing — finding myself in a situation where stress should be avoided as much as possible at the absolutely most stressful season of the year was less than ideal, to put it mildly. Being introverted didn’t help, either; inevitable visits from family and friends, while welcome and comforting in some ways, were ultimately putting an extra strain on me which I nearly could not afford. By late December I was housebound, lacking the energy to do more than walk a block down the street before I had to sit down and catch my breath. By the end of the month, having survived both Christmas and a severe bout of the flu (and all its lovely symptoms, including vomiting, body aches and a torturous cough), I was too weak to have any more visitors.
The funny thing was, all that quality time with friends and family was the main reason I’d agreed to delay the operation in the first place. I had been assured, by more than one doctor, that it would be perfectly all right to put off surgery until after the holidays, so that I could enjoy said holidays outside of the hospital. At some point, however, a large part of me came to regret that decision. While on my increasingly rare good days I did manage to feel grateful for the extra time I’d been given with my loved ones (just in case something did go wrong with my surgery), mostly I was just scared and in pain and wishing desperately to get it all over with, one way or another.
Originally I wanted surgery on January 2nd, just after New Year’s. That was the earliest it could be scheduled (outside of an emergency situation), but beyond that I liked the symbolism of it. New year, new heart valve, new lease on life, right?
Once again, things didn’t quite go as I expected. There were certain tests I needed done before surgery to ensure no surprises would crop up during the procedure, including a 64-slice CT scan to check for signs of heart disease which could not be detected with an echo or electrocardiogram. My body, however, was not feeling particularly cooperative at that point, and the doctors were unable to safely lower my heart rate far enough down to conduct the test.
This meant I had to undergo a minimally invasive (but definitely still somewhat invasive) cardiac catheterization procedure. Basically, a catheter tube would be inserted via an artery in my leg and threaded up to my heart, where it would be used to look for signs of heart disease, among other things. During the procedure I would be heavily sedated, but still conscious; afterwards I would have to lie very still for about four hours (this was actually the worst part) to prevent the healing artery from leaking all over the place.
It was a surreal, and extremely uncomfortable, experience. As I wrote in my journal,
“I do remember catching snatches of phrases, usually something to do with switching wires and looking at different areas of my heart, at which point I would quickly stop listening again. I also remember at one point the sedatives started to wear off a little and I felt my heart beat a little harder; I asked the doctor if it was normal and he reassured me it was, then turned to the nurse and told her to give me the rest of the sedatives (probably to shut me up).
. . . [The insertion site] ached the first day, and more than that it made me nervous because I knew that overexertion of any kind could “pop” the artery back open and I could bleed to death. I couldn’t even lift my leg enough to get into bed at first; I had to sleep on the couch . . . Thankfully it seemed to get better every time I woke from sleep, and at this point the pain is almost totally gone.
The bruising, however, is atrocious; as I told [a friend], it looks like someone tried to beat me to death by curb-stomping my thigh repeatedly. It’s bigger than my hand and all sorts of awful colors — the worst are the bits where old, reddish blood is still visible under the skin, it looks like dripping paint — but at least it will fade, eventually.”
The catheterization, thankfully, was the last major test I needed to complete, and at long last surgery was finally scheduled for January 14th.
This is the second post in a five-part series about my experience with aortic valve replacement surgery. Links to the rest of the posts in the series are listed below.
- My AVR Story, CH1: Once Upon a Diagnosis
- My AVR Story, CH3: Surviving Surgery
- My AVR Story, CH4: Hospital Adventures
- My AVR Story, CH5: Happily Ever After