Health care is Greater Cleveland's largest industry, and one that our newsroom has invested significant resources to cover for years, but I suddenly had a new perspective on it.
The challenge is how to cover something so huge. Breathtaking medical research is conducted here. There are three major health systems, a large number of employees and a wide range of patients passing through each day. There are stories of people battling terrible diseases. Medical expenses are mounting. And then there are the fundamentals, such as workplace conditions, drug prices, nursing shortages, and the rapidly changing landscape of service delivery.
We are doing our best, but a complete response would require dozens of full-time health reporters.
I recently spent five days observing the healthcare industry as it is, with dozens of blood tests, X-rays, CT scans, ultrasounds, MRIs, and at least 100 touchpoints, from the emergency room to admission and discharge. Ta. With medical workers. I'm still working through many of the insights I gained from that experience.
While all newsroom leaders may benefit from such a perspective, I do not recommend this approach. As you know, I was quite unwell for a few days there and it was very difficult for the medical team at University Hospital trying to figure out what was wrong with me.
The roots of my illness lie in my diagnosis of celiac disease in 2001. This was long before most people had heard of celiac disease or the gluten that causes it. Since then, America has learned a lot about gluten, a protein found in wheat and other grains. Many people who don't have celiac disease feel healthier by avoiding gluten.
Gluten is poison to me. When I eat it, my immune system goes into overdrive and destroys the lining of my stomach. For about four days, I endured the pain of the attack, which was sometimes accompanied by internal bleeding. I feel nauseous. You feel terrible, endure painful cramps for weeks while your stomach repairs itself, are unable to absorb nutrients from food, and feel increasingly fatigued.
But it's more than that. Triggering the autoimmune system affects other systems. Basically, for a few weeks I've been a mess and no part of me feels right.
Gluten is ubiquitous, but I've been able to avoid it. I had gone nine years without taking it until it caught my eye at a downtown Cleveland restaurant on September 10th. The reaction that followed was unprecedented.
I always have a slight fever after being contaminated, and this time too, after eating gluten, my temperature rose 2 degrees for most of the day. However, about 24 hours after eating gluten, my body temperature spiked. By midnight it was 103 degrees and I had the worst headache I've ever had. Every beat of my heart felt like a hammer hitting my skull. boom. boom. boom. I was lying in bed in pain.
By morning, my fever had dropped to about 100 degrees and my headache had subsided, but that night I had a high fever and headache again, and my chest felt a little tight. The same pattern repeated the next night, with even more pressure in my chest. The next night, the tightness in my chest reminded me of a bad case of pneumonia I had 30 years ago. By morning, I could barely say four words, barely audible without gasping for breath.
I knew I was in trouble, so I asked my wife to take me to the emergency room at University Hospital Main Campus, and my adventure in the health care system began.
The doctor examined me right away and carefully listened to my explanation of the gluten contamination and symptoms. My explanation was so bizarre that he consulted the ER's primary doctor and sent me in to focus on diagnostic blood tests.
One of my problems as a celiac patient is that once an autoimmune storm is triggered, my body doesn't handle fluids very well. Despite drinking water and Gatorade for days to keep the fever down, he was so dehydrated by the time he arrived at the ER that nurses were unable to pump up his veins. She tried everywhere: the inside of my elbow, my wrist, the back of my hand. No luck. UH has a specialist who specializes in cases like mine, but even with that specialist, it took more than five minutes to insert a needle into a blood vessel.
Blood tests take a long time, so I had to wait for hours, the only interruption being when I went to the radiology department for a chest x-ray. Tests found no pneumonia or other problems. When the blood test results started coming in and it became clear that my system was messed up, the ER doctors admitted me.
Even though the x-rays were negative, the attending doctor in the ER was convinced I had pneumonia and ordered a CT scan at 2:45am. She was right. He had pneumonia in his right lung.
You have no idea how weird that is. Pneumonia is not associated with celiac disease. How did you get it?
The morning I contracted the virus, I did my usual intense Tuesday bike ride on my Peloton bike, something I couldn't do with pneumonia. So somehow, by some unlikely coincidence, I stumbled into pneumonia at the exact moment my body was going into autoimmune chaos from gluten.
Test results came in one after another, showing that the bodies were deranged. Almost all blood levels were significantly above or below normal, making it difficult for doctors to diagnose. What was particularly interesting was the level of his liver, which was quite yellow due to jaundice and must have been in a terrible condition. The previous gluten contamination had also caused strange liver numbers, which I explained were clearly part of an autoimmune reaction, but the numbers were so alarming that a specialist was consulted. Eventually, an ultrasound and subsequent MRI were performed, both of which showed nothing remarkable about my liver or other internal organs.
Blood tests also revealed the possibility of a secondary blood infection, which caused doctors to become quite concerned, but ultimately determined that the blood sample was likely contaminated.
A pneumonia diagnosis brought me an IV bag of antibiotics, the first time I'd taken antibiotics in 20 years, and they weren't as effective as doctors had hoped. The fever remained. So the doctors took the strongest antibiotic and put it into my IV. It's finally starting to stabilize.
During this situation, I felt groggy from the fever and lack of sleep. A hospital bed finally became available, so I was transferred when my fever subsided. For the first time in a week, I was able to get a few hours of deep sleep. However, many phlebotomists, nurses, doctors, and other specialists visit regularly and are still working to overcome the challenges my tests presented. Sleep never lasted more than an hour or two.
After all, all their work made me feel good. All the hospital staff who came to my room genuinely tried to help me and listened to what I had to say. I have never felt ignored or disrespected. I think there was a fierceness in their eyes that told them they were going to overcome the challenges I presented them with. The quality of care provided by each was excellent.
However, it was not VIP treatment. They didn't know who I was. I know that many studies show that minority communities don't feel like they get the level of attention that I received, but I can hear the conversations health professionals have with patients up and down the hallways. I'm here. Everyone was treated the same way I was.
This experience was humbling. I take care of myself. I ride that Peloton bike hard every day. I eat right. Last year, my wife and I eliminated alcohol from our diets because of all the research that conclusively showed how bad alcohol is for us. But within 24 hours, I went from being in good health to lying there wondering if I would survive, if I would ever see my grandchildren again, and if my wife would survive without me. Ta. I have never been so sick.
I believe the only reason I'm still here is because I live in a city with the best health care.
As for how I got pneumonia at the exact moment the immune storm hit, doctors say they'll probably never know how it happened. They think it may be related to the coronavirus in some way. The symptoms first appeared in late July and rebounded a week later in August. So was I somehow left exposed? My family doctor thinks so. She thinks what happened to me was a perfect storm. The depletion of COVID-19, gluten contamination, and exposure to pneumonia all combined in a short period of time.
You could call that a terrible stroke of luck, and it is. But I'm still here thanks to some luck – being under the care of a university hospital. I am forever in their debt. And I think that new aspects will emerge in the scope of healthcare in the future.
I wasn't planning on writing about this, but some colleagues thought readers might find value in it. Indeed, I heard that quite a few people were worried about me and wished me well. thank you.
I'm doing well now and getting stronger day by day. But I'm not sure if I'll eat at the restaurant again.
I'm at cquinn@cleveland.com
Thank you for reading.