A simple sandwich offered new hope when I needed it most

It was the first time in four weeks I’d been hungry — actually, truly hungry. My mouth watered at the thought of a fresh, hot breakfast. During my stay in the intensive care unit (ICU), I’d lost 20 pounds and a great deal of muscle mass and was growing weaker each day. But that morning, I was finally feeling mentally and physically strong enough to eat.

The hospital provided a large, colorful, folded menu for each meal. Patients could call the kitchen, place an order, and someone would bring it to your room. All the options looked good, but I settled on oatmeal with fruit, bacon, and eggs. I called, dreaming of salty bacon hitting my tastebuds, only to be told that because of my condition, I wasn’t allowed to have oatmeal or bacon.

OK, no big deal. I decided on eggs, hash browns, a banana, and turkey sausage. But again, I got hit with, “I’m sorry, you can’t have hash browns or bananas.” Are you freaking kidding me? I listed off three more combinations and was told there were restrictions on elements of each meal.

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“Then what can I eat?” I knew my tone at this point was nasty, but I was so frustrated I didn’t care.

The woman on the other end of the line said, “You can have cereal, apples, fruit cocktail, black coffee, skim milk, apple juice, grape juice, turkey sausage, egg whites, chicken broth, and … that’s about it.” I could tell she was trying to sound upbeat, despite my anger. But I felt completely defeated. I was so mad I didn’t even want to eat now. I sighed.

“OK, send up cereal, fruit cocktail, and apple juice.” I selected foods that could sit for a while because I’d need to calm down before eating.

My mental health takes another hit

That, I thought, would be my life. It was the fall of 2020, and I was in the ICU after nearly dying from the ultrarare atypical hemolytic uremic syndrome (aHUS), though I hadn’t been diagnosed yet. But I’d experienced multiorgan failure, hypertrophic cardiomyopathy, severe hypertension, and possibly permanent kidney, liver, and heart damage. I was barely staying alive, and that because of continuous dialysis and blood transfusions.

Because I was so close to death, I was apparently on a restricted diet. When I asked my nurses what the deal was, they explained I was on a “renal and heart diet,” meaning I had to avoid foods high in potassium, sodium, calcium, phosphorus, and protein, as well as any fried foods. Despite the large menu, that left me with few options.

Over the next week, I ate virtually the same few foods because there were so many restrictions. Even most fruits were off the table because they contained potassium. I remember thinking, “I’m a grown adult, and I’m being told what I can and can’t eat?”

I was already depressed, weak, and hungry, and these restrictions made me even more upset. Food normally cheered me up and gave me something to look forward to. But now, I couldn’t even find joy in that. I already felt like I’d lost control over my life, so losing the ability to eat what I wanted was a huge blow to my mental health and will to get better.

A turning point

Then, one of the parents from the preschool where I worked sent me an Uber Eats gift card. I stared at the message in disbelief. Why hadn’t I thought of ordering food before this moment? I know and appreciate that the restrictions were part of the effort to keep me alive, but I was no longer on the brink of death. Surely a little “real” food wouldn’t hurt?

I ordered Subway for my first meal. I was starving and so excited. When the sandwich arrived, I almost cried. I’d ordered a teriyaki chicken sub — grilled chicken smothered in melting provolone cheese with crisp lettuce, sweet and smoky teriyaki sauce, and fluffy bread. You would’ve thought I had a king crab dinner in front of me, I was so happy.

It wasn’t just about the sandwich; it was about control. About being able to make a decision for myself again. About a little normalcy after weeks of the unknown. And it was even about my mental health and having something to look forward to. My nurses must’ve told my doctors, because my food restrictions were lifted the next morning.

That was a huge turning point in my recovery. I gained new hope and determination — all because of a sandwich.

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.