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Aileen C.

Aileen C.
Survivor

It was December 2018 and I experienced what seemed like a mild muscle twinge, located on the lower left part of my back. I figured I was just starting to show signs of age, being about to turn 48. Over the next month the pain worsened. I started taking muscle spasm meds. I went to an emergency clinic 3 times. Each time they gave me painkillers and let me go. I had no primary care doctor at the time. By early January, I was sitting in my condo screaming in pain. Yet I was in denial. I tried to to on a business trip from CA to DC – and had to turn right around. I was in so much pain that I had to be wheelchaired through both airports.

I finally, too late, did the obvious right thing, got a primary care doctor who promptly sent me to the hospital. They gave me every test you can think of. The bacteria had so enveloped my bloodstream and mucked everything up that they thought I might have lung cancer, or a heart problem. (Sepsis and Bacterial Infections) My kidneys were failing from all those painkillers. Finally they did a biopsy of my lower back, and pus oozed out.

Five days later I was sent home with a PICC line. I remember a parade of specialists marching into my hospital room to shake my hand and shake their heads, saying, “We thought you were a goner.” I spent six weeks injecting antibiotics, saline and heparin into my arm 3 times a day. I lost 25 pounds, as it’s hard to digest food when you have no good bacteria left in your belly. Luckily I had a cat sitter who doubled as a friend and rescuer, who went and got my meds for me. I had an incredibly supportive crew of colleagues and was already working from home. I had a budding romance.

But it wasn’t over. After six weeks, the PICC line came out, and my “infectious disease guy,” as I called my specialty doctor, cautiously agreed that I could go visit my company office in NYC in April. He wrote me a prescription for two weeks of oral antibiotics just to be sure. But alas, due to some wonderfully typical arcane bureaucratic BS, my insurance company wouldn’t approve the meds. So I took a chance and went to NYC without them. Within two days, I was in a NYC hospital. This time, the bacteria had rallied and gathered in my left shoulder. It felt like my clavicle had been crushed by a hammer.

Four more days in the hospital, with doctors conducting cross-country discussions. I was running out of vein space for all the blood tests. My arms were so used up that they ended up sticking a needle in my pinky.

Luckily, I made it back home and finally got that ill-delayed regimen of oral antibiotics, which I stayed on for another few weeks, constantly retching, losing more weight, feeling nauseated all the time. But at least I didn’t have to have a PICC line again!

I thought it was all finally over. But I kept the leftover meds just in case. In July, my hair started falling out like candy from a newly burst piñata. I strained my relationship with my boyfriend with outbursts and atypical clinginess.

A little over a year later (thank god this didn’t happen during the pandemic!), I have gained back much weight and am exercising regularly again. But occasionally, my muscles start aching right away after a simple task. Sometimes it feels like my lungs are bruised. I will never be able to do weight training anywhere near what I could. My pulse is much higher all the time than it used to be.

The bacteria had flooded my body the way salt water flooded NYC subway tunnels during Superstorm Sandy. Even after the tunnels were dewatered, the lasting effects of corrosion lingered. My body will never feel quite the same. It’s like I lost at least five years of what remained of my youth. But thanks to incredibly professional medical staff on both coasts, and a few very good friends in my life, I can say I’m pretty damn lucky.

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