I Contracted Flesh-Eating Bacteria From a Blood Transfusion
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I Contracted Flesh-Eating Bacteria From a Blood Transfusion
A common medical procedure led to life-altering injuries and PTSD, and I’m not the only one.
I want to caveat what I am about to share with both a disclaimer and a trigger warning. I will be discussing birth trauma and medical injury, holes in the FDA’s blood transfusion safety in testing requirements and how the consent for treatment forms you sign at intake for a surgical procedure can, and likely will, mitigate any legal recourse afforded you when the doctors screw up.
When I survived a brain tumor at 21, I assumed my medical death-defying miracles were past me, but when I gave birth to my twins in 2015, a botched C-section and subsequently needed blood transfusion almost killed me and permanently disabled me. After a healthy, low-risk twin pregnancy under the care of the top high-risk OB-GYN at a major cutting edge hospital system, I trusted that my scheduled C-section was going to be a beautiful close to my final pregnancy (they were my third and fourth babies). Unfortunately though, my surgeon failed to close my uterus correctly, and I bled internally for two days before my HCG levels tanked and a blood transfusion was needed. I was reassured that this was a common procedure and "very safe." I thought, “Two quick bags of blood and then I can finally get released and take my babies home.”
I Was Put on Life Support
Unfortunately, that second transfusion bag was teeming with a flesh-eating bacteria called pseudomonas fluorescens. All it took was 15 minutes hooked up to that transfusion to send my body crashing into a septic freefall. I would go on to lose my entire abdominal wall, muscle and flesh and all of the tissue down to the bone on my left wrist where my IV had been. I survived burn sepsis, multisystem organ failure and a subsequent 30+ surgeries over a two-year period trying to put as much of me back together as possible. I had to relearn everything—how to swallow, how to cough, sit up, stand, walk, shower, even how to get on and off the toilet. The process was arduous.
While I was in the ICU, I was not yet aware enough of my surroundings to rightly process what was going on, so all I knew was that the respiratory therapists wouldn’t let me have a drink of water, and in my mental state, my husband and parents were in on it. I lashed out at everyone who tried to help.
As more time went on and the right medication was added to address my ICU-delirium-induced hallucinations, I gained my perspective and fought harder with myself than others. Once I figured out how to cough without abdominal muscle, I stopped choking on my own spit—“OK, progress.” Once I successfully used my throat muscles to swallow a sip of ice water—“Great, after weeks, you get some relief to the dryness in your mouth and throat.” Sitting up was a whole other beast. Pull one leg up, grip the underside of your thigh with your hands, rock forward and use the momentum and your quad muscle to sit up. Each step in regaining your functional abilities with a severely weakened and altered body after weeks of life support destroys you because immobility knocks you out in a kind of exhaustion that is hard to describe to anyone who hasn’t lived it. But for me, every step forward put me closer to what I wanted—no, needed: to see my babies, all four of them.
When there were whispers of sending me to a rehabilitation center to continue the recovery longer term, something in me exploded. Not. A. Chance. I knew that I had survived for my family, and I was not going to spend another minute stuck in a hospital bed away from them. I told my family and the hospital staff that they needed to work to get me stable enough to complete my rehab at home. I knew it would be harder and more of a strain on our support network, but I also knew I needed my children near me to keep going. A few days before Halloween, I made it home. I’m convinced to this day that I recovered at a pace only a mother of small children can.
I Discovered Support Groups and Found I Wasn’t the Only Case
The cascading effect of my injury has been eye-opening. When one gets hurt in a sudden and traumatic way, you spend an ungodly amount of time researching, hunting for answers, chasing down a community of others who have experienced it. You ask yourself why? Why me? How? How did this happen? Representatives from the CDC and the hospital’s infectious disease department met with my husband and immediate family members while I was on life support to try to understand. What they got out of it was that I was a one in five million case. That may have been accurate. It is totally possible that I was the only 30-year-old, white mother of twins to contract this specific strain of flesh-eating bacteria from a blood transfusion. But I am not such an oddity. To cope with the resultant post-traumatic stress disorder, I did what any reeling mom stuck in bed, trying to connect the dots does: I Googled medical articles, and I hit support groups on social media. I searched hashtags and keywords and found there is a much larger population of people injured by bacterial infections from blood transfusions in the United States than is reported.
When I signed my consent for that medical product, I assumed because they test every bag for hepatitis C, HIV and various other commonly known infectious diseases, that they also watch for bacteria, especially those strains that cause such devastating injury to medically vulnerable patients. So WHY. DON’T. THEY? Advances have been made since 2015, including something known as pathogen reduction technology that gets added to some, but not all, blood products to stop the growth of bacteria during long-term storage. Not all.
People ask, “Wow, how much money did you get from the hospital?” If only it was that simple. We tried. We hired a firm to file a malpractice claim against the hospital and the blood bank that supplied the tainted product. After a year and a half of back and forth with lawyers, depositions and discovery, we were informed that because I signed the consent for treatment paperwork for my C-section and the injury was incurred during the same hospital stay, the liability argument would likely not factor in. Since our chances of success were low, we were given two options: drop the lawsuit altogether, or shell out tens of thousands of dollars we didn’t have to take it to a jury with the risk that nothing would come of it. Since we had already lost our savings making handicapable changes to our home and paying for countless medical treatments and equipment not covered by insurance, we had no choice. We withdrew the lawsuit and cut our losses. We sold my dream home and moved 100 miles away from what was left of our support network in order to pay for my ongoing medical expenses.
I Am Working to Rebuild for Myself and My Family
On the back end of this six years later, having processed through the severe trauma triggers and recovered enough of myself to enjoy life again, I am getting into a space of thankfulness. It took one bag of blood to destroy me physically and at times mentally, but it also took, ironically, hundreds of blood products to rescue me from my medical crisis. I existed for a long time in this agonizing purgatory where my former life, body and mental capabilities were gone, but I also wasn’t ready to be in this new body that felt foreign to me. I developed obsessive-compulsive disorder with intrusive thoughts about bacteria, so I can’t explain what it did to me to know my entire blood volume was no longer mine after an experience like this. I started showering and scrubbing my functional hand raw with bleach. I’m glad those around me held space while I worked through the unknown.
I struggled to cope with my own mental illness and be a good mother to four children who were also forever changed by these events outside of their ability to understand. It devastated me to not be able to lift my babies or have them pummel me in the stomach as they had always been able to do. Fearing the germs on their hands, not being able to comfort them when they got sick because of multiple infections in my wound vacs put me back in the hospital and surgical ICU. Not being able to be intimate with my husband for months at a time because of drain tubes that pull and hurt, high-dose opiates which kill your drive anyway and wondering if we would ever share such a crucial part of marriage again. There were months of sleepless nights (PTSD-induced hypervigilance is a bitch) where I contemplated suicide. I felt like I was dying inside while on the outside trying to keep it together for them.
I tried turning to the social media groups for victims of necrotizing fasciitis and/or blood transfusion injury, which helped initially. It was nice to be able to discuss my injury with others who shared a common experience, but I quickly found myself holding others within this online community at bay because in our collective trauma, I noticed there was a competitive spirit of sorts. There existed in this space a complicated dynamic wherein we were all seeking emotional validation but also comparing photos and horror stories to see who suffered the most as a result of their injury. My crisis therapist called this trauma porn. We try to desensitize the massive impact of the event on our senses by inundating them with graphic imagery and storylines that make our situation feel like it wasn’t actually all that bad. What it did for me was meet adrenaline surge with adrenaline wave, and I found it made my anxiety and flashbacks much worse.
The lesser-known side of PTSD involves this unending, sometimes deafening voice in your head that tells you your family would have been better off if you hadn’t survived. That you’re a burden and everyone hates you but is too polite to say it to your face. It makes everything seem so hopeless. There are incredible medications out there if one is able to raise the white flag and admit that they’re struggling to the right person. I was seeing a psychiatrist, but it wasn’t until I saw a pain management doctor who had extensive experience working with wounded war veterans that I found hope. Ironically, he was the one who found the right medication used commonly for nerve pain, and it was like someone flipped off a light switch to those voices and I could see the sunlight again.
There was and still is a lot of work to do. I’ve also fought my way back from an opiate addiction developed after years of pain doctors throwing pills at me telling me, “This is just how it’ll be the rest of your life.” As a result, I am learning how to cope with the challenges of living every moment in level 8-10 pain without opiate medication. My new fight is for my sobriety, which has taken the forefront of my medical recovery, and I am working hard to rebuild a sense of normalcy for myself, the kids and my husband. Many afflicted with transfusion infections are not as lucky as I was.
At least I lived, right?