We’ll Call It “Busy Monday”

In between all the fashion, sewing, drawing and such, Artful Blasphemy is also always dealing with a chronic condition–Ehlers Danlos Syndrome (EDS). There are a myriad of co-morbidities (conditions that appear along with EDS, sometimes for reasons unknown beyond that they do) and also there is a certain amount of unpredictability, as collagen is present in 90% of the body’s structures, and if your collagen is flawed, then…shit happens.

After a year of increasingly debilitating arrhythmia, I had an Electrophysiology Study and Abalation on Friday, June 10th. Yeah, just. This involves the patient being sedated while a catheter is inserted into the big vein in the groin, through which leads are fed to the heart. The doctor watches for the offending electrical impulse and then burns it for 2-3 seconds to stop it. It is generally the only curative option for arrhythmia. Naturally, my particular form of Premature Ventricular Contraction was rare and interesting. Oh, how my heart (ha ha) plunges when a specialist uses those words. My hair is interesting, my clothes are interesting, please; let us leave the body to be dull, predictable, average.

The surgeon who did my procedure is one of two in the region who work with my interesting type, and he flies into El Paso from Austin once a month. When he spoke with me pre-op (as the cocktail of valium and benadryl did absolutely nothing to calm my ass down), he asked, “When do you notice the PVCs the most? What are you doing when they happen?” I said, “I have them all the time. They wake me up at night, they are really bad in the morning, they never go away.” He was surprised. He said that the use of general anesthesia often suppresses them which is why they use lighter sedation (something I was beyond, beyond terrified about for a week ahead of time). By then I had been assured by the kindest anesthesiologist I’ve ever had that I would feel nothing, no matter what they were doing, and even if I were awake enough to answer questions. He told us it would take not more than 2 hours, 2.5 at the outside.

It took 3.5 hours. Instead of going just through the vein in the groin, they also had to go through the artery as well, because they had to access it from both sides of my heart. He told us that the PVCs were constant, my heart was never beating in a normal rhythm. (That makes me feel a lot better about how badly I have felt the last several months, and how overwhelming so many things were becoming, like work, which became extremely stressful and not just because my heart was completely off kilter, but one feeds the other) Whereas normally, once the offending impulse is located, it takes 2-3 seconds of burning to eliminate, mine took over 30 seconds, from both sides. Which means I have an angry heart that needs some time to heal now.

I have never in my life met a surgeon who was as kind and warm as mine was. He dismissed nothing–no concern of mine was too small. I asked if he understood EDS, and he said he had researched it and would be sure to be as gentle as possible with my vessels, and would be using smaller wires to avoid stressing them. He hugged the team after the procedure, he knocked on my hospital room door and didn’t come in until invited, he called when he was running late to let us know and to apologize. He explained to my husband that I would have chest pain following the procedure because so much had to be burned, and that it would cause anxiety (NOT because I am a girl) because my brain would interpret that as a heart attack.

These days, hospitals don’t release you because you are recovered, they release you as soon as they suspect you won’t bleed out or anything. I’m told to expect it to be 10 days before I feel 100%. He said I would have periods of fatigue because my heart is inflamed and swollen from being burned. I cried all the way home from the hospital, mainly just out of response to big physical trauma, emotional depletion and exhaustion. There’s a series of gross, large holes in my groin, with a lot of bruising. I’m supposed to press down on it if I sneeze or anything. I’m recognizing that when I start to have that sensation that I am going to start crying, it’s time to stop whatever activity (reading, sitting on the couch, playing Match 3 games on my phone) and go take a nap.

Being forced to slow down is difficult, but if this did, as they believe, fix the problem, I may start to feel better than I’ve felt in about a year’s time. That would be nice, to say the least.

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