The Diagnosis (Part Four)

Continued from Part Three

During the ambulance ride from one hospital to the other, I struck up a conversation with the EMT who was in the back with me, handling my IV fluids. I mentioned that I wasn’t from the Kansas City area and that the pizza here was terrible. He told me a friend of his was from Rhode Island and had opened a restaurant called Providence Pizza, serving east-coast style pizza by the slice. Even better, it was only about twenty minutes from my house. I may have gotten way too excited about this information.

After spending a week at St. Luke’s East, which was a clean, modern and very nice facility, arriving at the St. Luke’s downtown location was something of a shock. The building itself was old, and poorly maintained. Each hallway felt long and under lit – my wife compared it to the hospital from the 1981 movie Halloween II.

I also noticed a strange smell permeating the building. I assumed it was a temporary thing, but I’ve since learned that this hospital always has this smell. The only way I can describe it is as if someone ordered french fries covered in vinegar and then left them in a trash can for two weeks. Every room, every hallway of this hospital has this smell at all times.

I was taken to my new room in the ICU and hooked back up to all my usual machines. Because they would be constantly drawing blood and injecting me with all sorts of drugs, they installed something called a PICC line into my arm and chest. This is a line of tubing that went into my veins near my heart, and came out of my arm. Rather then constantly injecting needles into me, the nurses could now just attach syringes or feed lines into the external ends of the PICC.


What my PICC line would look like if I had no face

Having come out of my fever, I remember a lot more about my time at the second hospital. Every morning a line of 7-10 doctors would come into my room, surround my bed, set up a collapsible podium, and describe to each other what my bowel movements were like. They wouldn’t actually speak to me about this, they just had notes. Someone, somewhere was closely monitoring my waste and making sure these doctors had up-to-the-minute information about it.

There was a lot of concern about my lungs, as my oxygen levels were still low. My room had no bathroom, just a toilet in the corner, but getting to and from it became a struggle; I would have to wait a few minutes each time I stood up in order to make sure I wasn’t going to pass out.

To help determine what was going on with my lungs, one of the doctors told me they were going to give me a Bronchial Biopsy, or a “Bronc.” He said they would be doing this early the following morning, so I was not to eat or drink anything starting the night before. Morning came, and the doctors were nowhere to be found. Then it was afternoon. Finally, around 4:30 in the afternoon, after approximately eighteen hours of no food or drink, the nurse told me the Bronc had been put off until the next day.

The pattern repeated itself the next day, with my morning appointment pushed back further and further, as I got angrier and thirstier. Finally, one of my doctors came in and told me the Bronc was cancelled, that they wouldn’t be doing it after all. He left, and I ordered some food and liquids. As I hung up the phone from my order, a different doctor came in and asked me if I was ready for my Bronc. I told him it had been cancelled, and he told me “Oh no, I just talked to that doctor in the hall. We’re going to do it after all.”

It was around this point that I realized two things:

  1. My doctors did not appear to have an actual plan.
  2. If they did have one, they felt no obligation to share it with me.

As they began to sedate me for the Bronc, I told them that I typically need more sedation than most people. I tend to fight back when something is causing me pain, even when I’m sedated. Over the years I’ve woken up to a lot of very angry dentists.

They assured me they knew what they were doing, and moved forward with the procedure. It was successful, but when I came around afterward they appeared concerned. The head doctor handed my wife a napkin with a list of drugs on it, and told her “Your husband needed much more sedation than we typically give our patients, and he was still conscious and talking during the operation. The next doctor you see, give them this list and tell them that’s what was needed to knock him out.”

I also started my first round of chemotherapy at this point, which was nothing like I had thought it would be. I had imagined radiation treatment, but all it involved was hooking me up to several different IVs and pumping me full of various drugs. Several of the drugs were so toxic that the nurses had to wear contamination suits while handling them, which is a less than comforting sight.

After my four days in the ICU, I was transferred to their “Neuro” wing to finish my recovery. My new room was at the very end of a long hallway, as far as possible from the nurse’s station and all other rooms, and the bed was undersized and uncomfortable, but I didn’t care. At this point, after nearly two weeks in the hospital, I was just desperate to get home.

Concluded in Part Five


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