Not all medical procedures are traumatic, despite what I’d believed
Reflecting on the renal biopsy procedure that went better than expected
A medical emergency can be a terrifying experience for anyone. If it’s followed with a complicated and rare medical diagnosis, it just intensifies the situation.
A few years ago, that’s what happened to me. Little did I know that it was the beginning of a long road.
I’m terrified of needles and medical procedures, including cesarean sections, IVs, spinal taps, severe medication allergies, surgical infections, and invasive gynecological exams. If something can go wrong for me, it most certainly will. So you can imagine my dismay when I had a deadly medical emergency in September 2020.
I was in the intensive care unit for nearly two months due to multiorgan failure caused by the onset of atypical hemolytic uremic syndrome, or aHUS. It took four weeks to get the diagnosis. During that time, I was subject to four blood draws a day, daily dialysis or plasmapheresis, and a barrage of tests and exams.
When I arrived at the emergency room, my kidneys were functioning at less than 5%. My nephrologist estimated that if I hadn’t sought care when I did, I could have died within about 18 hours. I had emergency surgery to have a port placed in my chest and began my first dialysis session that night.
As days turned into weeks, more blood was taken. More tests were run. More doctors joined the team. But my kidney damage raised the biggest questions: Was it an acute injury that could potentially heal over time? Or would I have end-stage renal disease for the rest of my life?
These questions were also important for financial reasons, as the specific diagnosis would determine the level of my healthcare benefits.
The easiest way to answer this was through a renal biopsy — an invasive procedure in which a kidney sample is collected and checked for permanent damage. But there was a problem: I was dying of a rare disease that had nearly destroyed all of the blood in my body. Cutting into a damaged organ would be risky. Doctors worried about damaging my kidneys further and the possibility that I would bleed to death during the biopsy.
I was already traumatized from the medical interventions I’d had thus far. When doctors placed my port, it was an emergency, so I wasn’t fully numb and felt most of the surgery. I was terrified of experiencing that kind of pain again.
Preparing for yet another procedure
Hospital staff drew my blood every morning at 4:30 to see if I was stable enough for the biopsy. After a week, it was finally scheduled.
I didn’t sleep at all the night before I was supposed to have the procedure. I wasn’t allowed to eat or drink after midnight, and I was so scared that I was shaking in bed. Doctors had been telling me for days how dangerous a renal biopsy could be.
I tossed and turned all night. Each drop of water hitting the basin echoed like a clock counting down the seconds until my impending doom. All the heart monitors on the ICU floor seemed to be beeping in sync.
I lay awake, waiting for the morning to come. At 4:30 a.m., I had my blood drawn as usual, followed by a weight check at 5 and my medications at 6. At 6:30, a nephrologist entered the room.
“Your labs aren’t looking great,” she said. “We should wait and see how you’re doing tomorrow.”
Was she kidding? I hadn’t eaten or slept, and my nerves were making me sick to my stomach. Nevertheless, we agreed to delay the procedure.
This same series of events happened seven more times. By the time I was finally being rolled in for my biopsy, I almost didn’t believe it. My blood pressure began climbing, and I was shaking and fidgeting. I told the technicians that I was insanely scared. They were already working on my IV “cocktail.”
Then came the moment of truth. I was lying face down on the machine, waiting for the sharp, cold metal to pierce my skin.
“OK, Ms. Jordan. You’re all set.”
Wait a minute — I didn’t even feel the biopsy! All of that stress, anguish, hype, and fear for the easiest procedure.
Based on the biopsy results, doctors eventually diagnosed me with end-stage renal failure. But thankfully, after five months of dialysis, my kidney function had improved enough that I was able to stop the therapy.
To this day, I still reflect on that renal biopsy that went much more smoothly than I expected. The experience taught me a powerful lesson: Sometimes the stress we put ourselves through can be worse than the actual task.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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