The hard way to come by an unvarnished look at healthcare: Letter from the Editor

Healthcare is the biggest industry in greater Cleveland and one that our newsroom has invested considerable resources covering over the years, but I suddenly have a new perspective on it.

The challenge is how to cover something so immense. You have the breathtaking medical research that happens here. You have the sheer scope of three major health systems – the large numbers of workers and patients who pass through every day. You have the narratives of people grappling with wrenching illnesses. You have stifling healthcare bills. And you have basics like workplace conditions, drug prices, nursing shortages and the rapidly changing landscape of providing services.

We do our best, but we'd need dozens of full-time health reporters to wrap our arms completely around it.

I recently had a five-day unvarnished look at our healthcare industry, from the emergency room through admission and discharge, with many dozens of blood tests, X-rays, a CT scan, an ultrasound and an MRI - and at least 100 touchpoints with healthcare professionals. I'm still processing many insights from the experience.

Every newsroom leader might benefit from such a view, but I would not recommend the method. You see, I was quite ill there for a few days, presenting one heck of a challenge to the University Hospitals medical teams trying to figure out what was wrong with me.

My illness has its roots in my diagnosis with Celiac Disease in 2001, long before most people had heard of it or the gluten that causes it. In the years since, America has learned plenty about gluten, a protein in wheat and other grains. Many people who do not have Celiac Disease feel healthier by avoiding gluten.

For me, gluten is poison. If I eat it, my immune system goes berserk and destroys the lining of my stomach. For about four days, I endure the pain of that attack, which can involve internal bleeding. I have nausea. I feel awful, and for a couple of weeks, until my stomach repairs itself, I endure painful cramps and don't absorb some nutrients from food, leaving me increasingly fatigued.

It's more than that, though. The triggering of the autoimmune system affects other systems. Basically, for a couple of weeks, I'm a mess and no part of me feels right.

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Gluten is ubiquitous, but I do manage to avoid it. I had gone nine years without ingesting it until a downtown Cleveland restaurant nailed me on Sept. 10. The reaction that followed was unprecedented.

I always had low-grade fevers after being contaminated, and for most of the day after I ate gluten this time, my temperature was up 2 degrees. But about 24 hours after I at the gluten, my temperature spiked. By midnight, it was 103, and came with a pounding headache the likes of which I had never experienced. Every beat of my heart felt like a hammer pounding my skull. Boom. Boom. Boom. I lay in bed in agony.

The fever dropped to around 100 as morning dawned, dissipating the headache, but that night, the high fever and headache returned, with a slight tightness in my chest. The pattern repeated the next night, with more tightness in my chest. And the next night, the chest tightness reminded me of a bad bout of pneumonia I had 30 years ago. By morning, I could say only four, barely audible words without gasping for a breath.

I knew I was in trouble, and asked my wife to take me to the emergency room at University Hospitals main campus, beginning my odyssey in the healthcare system.

A doctor saw me almost immediately and listened closely as I described my gluten contamination and symptoms. Because what I described was so odd, he consulted with the chief ER doctor, who then visited me to help focus blood tests for a diagnosis.

One of my problems as a Celiac is that once the autoimmune storm is triggered, my body doesn't process fluids well. Even though I spent days downing quarts of water and Gatorade to battle my fever, I was so dehydrated when I arrived at the ER that the nurse could not raise a vein. She tried everywhere, inside the elbows, on my wrists and the backs of my hands. No luck. UH has specialists for cases like mine, and even with him, it took more than 5 minutes to get a needle into a blood vessel.

Blood tests take time, so hours of waiting ensued, interrupted only by a trip to radiology for a chest x-ray, which did not show pneumonia or any other issues. When the blood test results did start arriving, revealing that my systems had gone haywire, the ER doctors admitted me.

Despite the negative X-ray, the chief ER doctor was pretty sure I had pneumonia and ordered a CT-scan at 2:45 a.m. She was right – I had pneumonia in my right lung.

You have no idea how odd that is. Pneumonia is not associated with Celiac Disease. How did I get it?

On the morning I was contaminated, I did my normal grueling Tuesday ride on a Peloton bike, something I could not possibly do with pneumonia. That means that somehow, by unlikely coincidence, at almost the exact moment my body was cascading into autoimmune tumult because of gluten, I came into contact with pneumonia.

The test results kept coming, showing a body in chaos. Almost every blood level was way above or way below normal, presenting doctors with a diagnosis challenge. Of particular interest were my liver levels, which said I should have been quite yellow with jaundice and in sorry shape. I explained that in prior gluten contaminations, my liver numbers also went haywire, evidently part of the autoimmune reaction, but the numbers were so alarming that specialists came in for consultation. Eventually, that resulted in the ultrasound and, later, the MRI, which both showed nothing remarkable about my liver or other internal organs.

The blood tests also revealed a possible secondary blood infection, which worried the doctors quite a bit until they eventually ruled it out as more likely a contaminated blood sample.

The pneumonia diagnosis brought an intravenous bag of antibiotics – the first time I had antibiotics in 20 years – but they didn't do what doctors expected. My fever remained. So , the doctors pulled out their most powerful antibiotic and put that into my IV. Finally, I began to stabilize.

Through all this, I felt like I was semi-conscious, with fever and lack of sleep. A bed finally opened up in the hospital, and I was moved there around the time the fever was dropping. I was able to get a few hours of deep sleep for the first time in a week. But a stream of phlebotomists, nurses, doctors, specialists and others visited regularly, still working to overcome the challenges my tests presented. Sleep never lasted more than an hour or two.

In the end, all their work got me well. Every hospital staff member who came to my room genuinely cared about helping me, and what's more, each listened to me. I never once felt was ignored or discounted. I think I saw a ferocity in their eyes, something that said they were going to overcome the challenge I presented. The quality of the care they each provided was excellent.

It was not VIP treatment, though. They did not know who I am. While I'm aware that plenty of studies have shown that minority communities do not feel they get the level of attention I received, I could hear the conversations the health professionals had with patients up and down the hallway. Everyone was treated the same way I was.

This experience was humbling. I take good care of myself. I ride that Peloton bike every single day, and hard. I eat right. Last year, my wife and I wiped alcohol from our diets because of all the studies conclusively showing how bad it is for us. Yet in 24 hours, I went from robust health to being laid so low I wondered if I'd survive, wondered if I'd see my grandkids again and about my wife continuing on without me. I've never been so sick.

I 'm pretty sure the only reason I'm still here is that we live in a city with the best healthcare available.

As for how I got pneumonia at the very moment of my immune storm, doctors say we'll likely never know how that happened. They wonder whether it somehow is related to COVID. I had it for the first time in late July, and then I had the rebound a week later, in August. Did that leave me exposed somehow? My family doctor thinks so. She thinks what happened to me was a perfect storm, a combination of being depleted by COVID, contaminated by gluten and exposed to pneumonia all in short order.

You could say that's terrible luck, and it is. But I'm still here because of some good luck – having been in the care of University Hospitals. I'm forever in their debt. And I suspect we'll have some new dimensions for our future coverage of healthcare.

I didn't plan to write about this, but several colleagues thought readers might find value in it. I certainly heard from quite a few people worried about me and wishing me well. Thanks for that.

I'm doing fine now, getting a bit stronger every day. But I don't know if I'll eat in a restaurant ever again.

I'm at m

Thanks for reading.