A Day in the City 2 (How do you get to NJH?)

Over an hour later I heard my name called and looked up to see a white coated gentleman walking towards me. On the hospital website there is a picture of Pulmo Doc siting very tall and straight, looking bulky and well built like a football player. I recognised his face but this was no football player. When I stood to greet him I was the taller one (although to be fair, I do stand at 5' 10" in my bare feet!) He lacked the easy affable, friendly nature and banter of my previous pulmo doc and I felt unsure about him at first but I quickly came to recognise a quiet intensity that I could identify with and an attention to detail and specifics that was reassuring. He was very soft-spoken and kindness and gentleness radiated from his eyes. We chatted about my health history, chatted about my current medication regime and as expected I found myself having to justify some of that.

You may remember from previous posts that currently my main treatment for sarcoidosis is an infusion every 6 weeks of a TNF inhibitor called remicade. It inhibits the reproduction capability of the specific cells that are understood to be responsible for forming granulomas or inflammation in the sarcoidosis disease process. Remicade was developed for use with rhematoid arthritis patients, it has not been officially sanctioned by the Food and Drug Administration for the treatment of sarcoidosis. This can cause concern for physicians and insurance companies. I have heard that one infusion of remicade can cost between $10,000 and $15,000. Physicians are concerned about the longterm effects of taking remicade: increased susceptibility to developing certain kinds of cancer being a major one, heart disease being another. The immuno-suppression that comes from taking such a drug also increase one's susceptibilty to serious infection, respiratory infections in particular. Remicade has been known to reactivate otherwise latent diseases such as TB. To begin a regime of remicade in the treatment of sarcoidosis demands that one have explored many other medication options first. It is not a treatment to begin without serious consideration and weighing of the risks and benefits involved.

I imagined I could see all of this passing through Pulmo Docs mind. He was quiet and thoughtful, then came the big question. "Have you ever had any kind of serious infection?" he asked. I paused wondering how best to answer this. "Well, yes. In late 2006 I developed pneumonia-like symptoms that my primary doc treated repeatedly with antibiotics. It got progressively worse." The memories came flooding back... I had been having frequent coughing fits that became increasingly productive (think thick green mucus here, sorry to be so yucky!) and eventually coughing up blood. Sometimes I observed tiny black specks in there. This went on for months. I was losing weight rapidly. In March of 2007 I asked my primary doc if we could take a sputum sample. It came back positive for some kind of fungus. The immediate thought was that I had cocidioidiomycosis or Valley Fever, not an uncommon diagnosis in the desert southwest although uncommon up in the mountains where I lived. I started on treatment for Valley Fever while we waited for the culture to grow out some more. It takes 6-8 weeks to get accurate, specific results. Finally I got a call from my primary doc, he was on vacation but had been checking in with the lab. "It's not Valley Fever" he said. "It's aspergillus niger. That's a common fungus all around us but usually doesn't pose a problem except it finds a compatible host. It has colonized in your lung. We need to get you to a large medical facility that is skilled in treating such things. This is bigger than I can handle" he humbly said.

A CT scan of the lungs revealed that chronic inflammation had eaten away a cavity in the upper lobe of my left lung creating a perfect environment for some opportunistic and reproductively-anxious aspergillus to set up home. I now knew why my left lung hurt so much to breathe in and why it hurt so much to cough and why I coughed up little black specks and blood all the time. This was a dangerous diagnosis. If left unchecked it could be fatal. I was still on some low dose of prednisone, an immuno-suppressing steroid. That had to be stopped immediately to allow my immune system to fight back the infection. A treatment of aspergillus-specific anti-fungals needed to be begun. My primary doc had done his residency at National Jewish Hospital in Colorado, one of the primary hospitals in the US for lung disease, and had some contacts there. He started working on getting me in for a consultation. And thus began my relationship with NJH...