Old pennies, raw liver, and the taste of blood being transfused
5 years after my lifesaving treatments, I still shudder when I sense that smell
The tastes of metal and a bloody organ swirled together in the back of my throat, similar to the smell of old pennies and raw liver. I scrunched my nose as my sinuses flooded with those sensations. The smell, which seemed to assault my olfactory system, somehow extended to my taste buds. “Twilight” and “Interview with the Vampire” lied to us; there’s nothing whimsical or sexy about tasting blood.
Blood transfusions have been saving lives since the early 1800s, but the concept has been around since the 1600s. Infusing someone with blood or blood products has become a huge part of modern medicine. And it’s saved me many times.
I’ve been anemic for as long as I can remember and have needed transfusions of iron and blood many times. Weakness, fatigue, bruising, excessive bleeding during periods, nosebleeds, and even bleeding gums are all symptoms that come and go in flares every few months for me.
But I wasn’t diagnosed with immune thrombocytopenia (ITP) until 2018. It was like a missing puzzle piece suddenly appeared from under the couch. I typically needed the infusion of only one bag of blood when treatment was necessary. But in 2020, when the worst bout of symptoms occurred, I needed a lot more.
It took 18 blood transfusions to bring me back from the brink of death. Several of my intensive care unit nurses said they’d never seen someone who needed that much blood survive. And several doctors have since said they have no idea how I was so sick yet able to drive to and walk into the emergency room with a child on my hip.
Completing the puzzle of my diseases
I’d seen these disease flares before. We’d thought they were a comorbidity of my lupus. But after weeks of testing and so many blood transfusions, doctors figured out that my ITP wasn’t acting alone. My body was destroying my blood faster then I could make it. Hemolytic anemia and ITP were often linked to atypical hemolytic uremic syndrome (aHUS). Now my puzzle was truly complete.
So every couple of days for weeks, I’d have a sweet nurse apprehensively come to my intensive care room with waivers and a blood bag in tow. A big requirement in blood transfusions is consent. So if a patient is cognizant, they’re given a whole disclosure statement about the potential dangers of blood transfusions. After the first five, it seemed silly to keep giving me “the talk” each time. So I’d wave the nurses in and tell them to hook me up.
But during this hospital stay, something was different. I was able to taste every single thing that was given to me via an IV. I assumed it was connected to my kidney failure, but I’m not sure. And that brings us back to tasting something akin to the smell of pennies and liver. I started sipping drinks during blood transfusions to try to wash that taste of blood out of my mouth. But the taste was deep, like it was coming straight out from the back of my tongue itself.
I hated it. Almost five years later, I still shudder a little when I smell blood because I feel like I can instantly taste it. Now that we understand more about my ITP, we mostly manage it by treating my aHUS, with a strong infusion similar to chemotherapy that mostly shuts down my immune system. I still need blood transfusions occasionally when my lab numbers start to decline. The taste is awful, but it grants new life with each drop.
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