When I was 18, I was just like any other freshman in college- I loved hanging out with my friends and family and was always cracking a joke. If you’ve ever seen the TV show Friends, the character Chandler is very much my personality (hates silences and tries to lighten the mood with humor). I was in my second semester at Daemen College in Buffalo, New York, majoring in Physician’s Assistant. I had just joined a sorority to try and branch out, as my first semester had been a little rough.
Like everyone else on campus I ate at the single dining hall (my college was extremely small) and, in an effort to stay healthy, tried to make salads a part of my regular diet. I never really thought that salad could make me sick, so when my stomach started to hurt on April 15, 2010, I had no idea what was going on.
It was a Thursday morning when I started feeling sick. Later that night, I had already had bloody diarrhea twice. A friend drove me to The Women’s and Children’s Hospital of Buffalo and by the time my parents arrived, I was doubled over in pain. I had had little fluid all day and nothing to eat. I kept asking the ER nurses for fluids and pain medication, but never received any. I had collected my own stool sample and when the nurse drew blood she got it all over the table and floor. It was truly an awful experience.
They had no real answers as my lab results came back negative for E. coli O157, Shigella, Campylobacter and Salmonella. Since they had no reason to keep me, they discharged me with some pain medicine and told me to follow up with my doctor back at home.
My parents took me to my dorm room to collect my textbooks, computer and a few other items. Taking me home for the weekend, we all expected I’d be back in classes on Monday. I spent the weekend taking the pain medication and was starting to run out. My mom called the on-call nurse at my doctor’s office for more, only to be told I should have never been discharged and needed to go back to the ER.
I was admitted that Sunday afternoon and doctors ran several tests to try and figure out what was wrong. Once again, I tested negative for E. coli O157, Shigella, Campylobacter and Salmonella. At this point, my bloody diarrhea had stopped and they decided to do a colonoscopy as the pain was in my lower bowel region, and my blood labs were pointing towards an infection. I was given colon cleansing medicine in the flavor of pineapple and, let me tell you, if I never eat a pineapple again it will be too soon.
Lab results came back revealing patchy inflammation in parts of my colon. The initial diagnosis was colitis. I would have to do a follow up colonoscopy in six months to confirm. This diagnosis was a stretch, however, as it did not have the typical findings of colitis. I was discharged on Wednesday, but later began vomiting profusely, and the diarrhea had returned. By that night I had nothing left in my system so it was just dry heaving and nausea. My mother called the doctor who prescribed anti-nausea medications to help.
From Wednesday to Sunday I experienced the worst nausea I’d ever had in my life. I’ve always been the type of person who would rather vomit than be nauseous as it is probably the worst feeling in the world. My parents forced liquids and whatever small foods they could on me to keep me hydrated, and by Sunday evening I finally turned the corner and began to actually keep small meals down.
On Monday I had my follow up doctor’s appointment with the gastroenterologist who performed my colonoscopy. My appetite was returning and I actually started to feel better. My mom wasn’t convinced though- she kept commenting on my gray coloring and the fact that walking short distances made me winded. I was getting dizzy easily but I just thought it was because I hadn’t had much food the past few days and I was recovering. The GE had more blood work done, then I went home and assumed everything was normal. That night I ate dinner with my parents and we all went to bed pretty early as it had been a long two weeks.
Around 10 or 11 pm the phone rang, but we all assumed it was my sister calling to see how things were and we decided to let the machine get it. The next morning I woke up unusually early and spent time with my parents as they were getting ready for work. I remember sitting on the kitchen floor petting my dog when my mom played back the voicemail from, who we thought was my sister, the night before. It was actually the on call doctor at the lab my blood was sent to urging us to get to the emergency room as my blood levels had dropped to an alarming 16 (normal levels are between 35-42). Since my dad was already half way to work and had a big presentation that day we told him to just keep going and my mom would keep him updated.
Once at the hospital more tests were done and it was found that my hematocrit levels had dropped even further to 14, and my kidney levels were more than three times the normal limit. My kidneys had gone into acute renal failure, I was profoundly anemic and my red blood cells were fragmenting. The only thing the doctors were waiting on was an open bed. When I was brought up to the ICU, a swarm of doctors greeted me, bombarding me with question after question. My parents were nowhere in sight and, despite being 18, I began to cry. I didn’t know the answers to these questions- I was in too much pain leading up to this point. I just wanted my mom. My ICU nurse, lord bless her, was an angel. She got my mom into the room and, when they had to put a catheter central line in my neck, she held my hand and told me stories of when she broke her arm. There was no one allowed in the room but the nurse and attending when this was being done. They placed a sheet over my head to help keep things sterile and I can still remember the feeling of warm blood trickling down my neck. I wasn’t able to wash my hair until two days later. And even then, my mom had to help me. I had been showering on my own for over 12 years but, because of my catheter and IV, I needed my mom’s help.
My blood count was so low that I had to get 2 plasma transfusions and 5 blood transfusions. This was another experience I’ll always remember. During the first transfusion, I broke out in hives from head to toe. It felt like every inch of my skin was crawling. They had to give me steroids and Benadryl to stop the reaction.
During my next plasmapheresis they gave me the medication prior to the start. I don’t remember much of this stay as I was heavily drugged. I am thankful for that because the parts I do remember I was in pain. When I got out of the hospital, I had night terrors for a few days as I was most likely coming off of the powerful pain killers. Or maybe it was because of what I had been through.
My parents and the rest of my family were extremely calm during the time I was sick and looking back, I am very thankful they stayed strong around me. They never broke down in front of me and always acted like everything was ok. I never even realized how serious my condition was until about a year after it had all happened. I was 18 years old, I didn’t understand that I could have very easily died. Doctors even told my parents I was extremely close to needing dialysis. If my dad hadn’t made the follow up doctor’s appointment so soon after my hospital visit I have no idea where I would be today.
My diagnosis was Hemolytic Uremic Syndrome (HUS) but doctors were extremely puzzled as my stool cultures had come back negative. NYS went back to my original culture from my first ER visit and had it tested for Shiga-toxin and was somehow able to work their way back to a positive result of E. coli O145. I had contracted a rare strand of E. coli, one that is not commonly tested for by both farmers and doctors, and from that developed HUS. I was in the healthy population too, a young adult in good health. HUS usually affects children under 5 and the elderly. There were 33 cases total from my outbreak, including two others who developed HUS. All from eating contaminated lettuce.
I was lucky. At 18, you don’t think about death, you just assume if you get sick you will eventually get better. Thankfully, I bounced back from the infection pretty quickly— my blood work being back within normal range by August.
But a lot of things have changed. After I got sick, I didn’t eat a salad for over a year, and I still struggle with walking into a restaurant without wondering about every thing that could be contaminated. I gained about thirty pounds in the hospital and, for a long time after ate only processed foods. My thinking was, if it was processed the chances of it killing me were pretty slim.
For three years I was in denial about a lot of things, including my weight. It wasn’t until my sister looked me in the eye, and told me that even though it wasn’t my fault for gaining the weight, it was up to me to lose it. That’s when my recovery began.
I’m 23 now, and I mostly just remember the pain. I still get what I call phantom pain on my left side right below my ribcage from time to time. Deja vu is the worst- little things will set it off and every time it happens, I go back to when I first got sick—back to that rainy April afternoon. Every year on April 16th, my mom sends me a “Happy ___ years of healthy” text. We are thankful every day that my case didn’t turn out like so many who contract a foodborne illness.
I don’t think an 18 year old, a 23 year old, or any person of any age should ever have to fear their food. I don’t think, at 18, I should have had to start worrying about the health of my kidneys simply because I tried to make a better food choice. I get my kidneys checked once a year now to make sure everything is still okay.
It was four years to the day I got out of the hospital that Stop Foodborne Illness reached out to me wanting to send me to California to meet lettuce farmers working to keep our food safe, and to connect with other victims of foodborne illness. That trip was so important to my recovery. I met people who had similar or, in my opinion, far more heartbreaking stories than my own with not so happy endings.
I learned more about the process of food handing and was given a peace of mind that there are people out there trying to help give consumers safe and healthy food. Food safety should be one of the top priorities in our federal government and I hope that by telling my story, others will get involved in this important issue.
