I really wanted to hear somebody say, “that sucks” instead of the more common, “stay positive”.
PATHOGEN: E. coli HUS | SOURCE: Establishment Serving Food, Undetermined
I was so hungry (and hate wasting money) so I decided to eat it.
Thankfully, these aren’t “famous last words” …
I was 25 years old in 2019 and considered myself pretty typical. I loved to travel, in fact I’d just been in Vegas to celebrate a friend’s birthday; I was pretty healthy and had no health concerns – I was already very particular about what I ate. I wasn’t really much of a meat eater, and I always had a tendency to over-examine my food; and, I was working my first “real” job out of college as an outpatient therapist for individuals suffering from mental illness.
It was August 7th. I had been out of the office when my lunch, which I’d already ordered that morning, arrived a little earlier than expected. The day was super busy and things took longer than expected, so by the time I returned to my office around 2 pm my soup and turkey sandwich had sat out for 3 or 4 hours.
I was so hungry (and hate wasting money) so I decided to eat it.
It tasted fine so I thought, “Whatever.” By 4pm my stomach felt … off, but it didn’t seem out of the ordinary. The next morning, I started feeling sick but I still didn’t think it was anything other than an average stomach bug. My energy level was fine, but I called off work anyway.
Because of my being a picky eater, I never thought something like this would happen to me.
On August 9th, I decided to go to urgent care because my stool had turned bloody. They took my sample and sent me home. Even though I didn’t really feel sick, I couldn’t stay out of the bathroom. A few hours later I felt so dehydrated that my boyfriend, John, took me to the Emergency Room. At the ER they ran a few tests, gave me fluids and sent me home with some antibiotics telling me I had colitis. As soon as I began the meds, I instantly felt worse. I avoided eating and drinking fluids and all I wanted to do was sleep. Except, that wasn’t really possible because I needed to use the bathroom 5-8 times an hour even though I could barely walk the 5 feet it took to get there.
Three long days later, John took me back to the ER. I was admitted right away, and started on fluids. By evening it was determined that my kidneys were not functioning. In fact, a biopsy of my kidney showed my levels operating right at 15%, when last Friday (just 3 days ago!) tests indicated my kidney function was at 100%. I was so confused and things were getting really blurry. Wait a minute! How can this be happening? I didn’t feel sick, I am a healthy person, and I was just in Vegas the week before! The kidney specialist is telling my family that I am experiencing renal failure. One minute the doctor says I have to start dialysis, and the next I’m getting an emergency catheter near my neck. The following day, I started treatment for kidney failure.
My kidney doctor said that I had one of three possible rare conditions: Hemolytic Uremic Syndrome (HUS), atypical HUS (aHUS), or Thrombotic Thrombocytopenic Purpura (TTP), which are all related to E. coli poisoning. But, since E. coli was NOT found in my system, he decided to do tests for all of those. At this point, I didn’t want to tell my friends about what was going on. What was I supposed to tell them?? I knew there would be questions, and I just didn’t have enough answers. John let the people I was closest with know, and just left it at that.
A week later, I started eating, and drinking, but I still couldn’t pee. The doctor informed me that my kidney function dropped to 12%. I felt so discouraged. It was unnerving and alarming, and I didn’t want it to get the best of me. But I’d be lying if I said I wasn’t wavering. I was started on plasmapheresis, and had a blood transfusion.
My parents felt that I should be transferred to Northwestern in Chicago, since that hospital would have more access to resources. But the doctors couldn’t give me a discharge date. I was growing frustrated. And it was discovered that I now also had pneumonia. I was started on antibiotics for pneumonia, and antibiotics to prevent meningitis, and meds for high blood pressure, and … I can’t even remember what else. I even had to start using a walker.
All of the tests came back negative and on August 28, after nearly a month, I was finally discharged. They believed it was E. coli that caused the HUS. I was released to outpatient dialysis twice a week, while still taking antibiotics and high blood pressure meds. I had to check my blood pressure daily and keep track of my urine output. I was also started on a drug called Soliris every other week to assist my kidneys. At this point, I had blurry vision and could barely drive, and it was discovered that the blood vessels behind my eyes had started leaking.
My life went on like this for almost another month. I returned to work the same week of my discharge. Luckily, I had great co-workers who showed their support by driving me to and from work. On September 25, after nearly two weeks of not eating (due to the effects of the antibiotics), I celebrated by having pizza for my first meal. It just happened to be John’s birthday too!! By the end of September, I was able to end dialysis and be off of all of my medications.
Things really started looking up. I started feeling like myself, but it was weird because I also felt different. Out of my whole experience, the thing I found most challenging was adjusting from being this “sick” person to just being “healthy” again. It went from people constantly reaching out, asking how I was doing and what they could do to help to what “normal” was before it all began.
Even though I was out of the hospital, I was still continually living with the after-effects. I was constantly tired and winded. I barely wanted to eat. And, being a mental health professional, I could clearly see that the mental adjustment was definitely going to be the most difficult part of all. Talking about my experience with the people in my life and being able to express how it felt (and feels) being helped needed to be untangled. I really wanted to hear somebody say, “that sucks” instead of the more common, “stay positive”. I wanted everyone to know that when I was stuck in the hospital and feeling down, or even after getting out – I was not getting discouraged, or thinking about giving up, I just wanted to acknowledge the emotions I was feeling thru all of that.
I never felt alone, ever. During my 28 inpatient days, I slept two nights alone. Between John, my dad, and my two uncles there was a rotation on who would sleep at the hospital so I didn’t have to be alone. My family made time in their schedule to visit — my mom bringing me food or whatever I needed, and my grandparents always making a point to stop by. My friends were always showing up (even when I asked them not to). And my best friend drove in from Milwaukee to visit me. One of my friends even forced me to let her wash my hair when I had no motivation to even think about doing it.
This experience helped me realize that even though we may not often verbalize our love and affection it is really evident in decisions and actions. It showed me that I really do have the greatest people in my life! I believe that care and support was the reason that I did not have the experience that many people face when confined to a hospital room. I couldn’t be more thankful. (As a side note: This experience also got my boyfriend to agree on getting our first dog together. )
As I write this, I am realizing that my one year mark was just a few weeks ago. And I thought 2019 was wild … 2020 has been a crazy year. Living thru this pandemic and the million little adjustments we’re all making to our lives has me thinking more. Because of the kidney disease I have been constantly anxious about getting sick and ending up in the hospital again. My eating has improved considerably (in part, because my doctor told me I had no restrictions food-wise), but I am still nervous about something I put in my mouth being contaminated with E. coli. As a result, I will either throw out perfectly good food (because it gave me a weird vibe) or overcook my food to ensure that it’s been cooked correctly.
Earlier this year, while getting a Covid test done at the urgent care center, I discovered my long lost stool sample results that I’d forgotten all about. After being hospitalized, undergoing dialysis, taking multiple doses of numerous medicines and everything else, it turns out I had E. coli O157. So, that’s that.
I knew I’d made a mistake on August 7th, eating that lunch that’d been left out for hours, but who knows if that was the actual or only reason for everything that came after?
I am a better therapist, girlfriend, family member and friend today because of this foodborne illness incident. While I am thankful that my eyes have been opened, I don’t recommend this experience to anyone. If, however, you find yourself in a similar situation remember that you are not alone. Whether it’s your family and friends or a support group or people like STOP that can relate to what’s happening to you, reaching out to others and asking for help is a good first step. And, never give up.
E. coli is strong, but I am stronger.