1.What if I had asthma in my secondary lung capillaries? He put me on a new medication, Zyflo, to treat this condition, but it did not seem to make a difference.
2.What if the loss of breath was due to sinus drip or acid reflux? He put me on a regimen of Prilosec and Pepcid AC, which ultimately had no perceptible impact.
3.What if I had a vocal cord dysfunction that constricted the amount of oxygen going to my lungs? This would require me visiting an ear, nose, and throat (ENT) doctor for an examination by a different specialist.
I arranged to see an ENT right after the holidays, two weeks before I was scheduled to fly to the Middle East to teach some courses. The doctor ran a laryngoscope down my throat. He saw no thickening and only minor evidence of acid reflux that he assessed as insignificant.
In February 2013, I returned to the allergy doctor who had sent me to the ENT. He recommended that I stop all asthma medications. I did so from February until May. When I stopped the medication, I could run for two or three minutes without stopping, but, by May, I could hardly run at all and usually speed-walked the entire five-mile course—while always looking for short cuts!
In March, my allergy doctor asked me to take a treadmill test to see whether I had restricted breathing problems indoors as well as outdoors (see Figure 4). I did the test on March 10 and encountered the same problems as when running outdoors. I could maintain a fast walk indefinitely but was unable to do a medium jog for more than four minutes. I could not run for more than a minute.
I continued to travel overseas on a regular basis to teach courses on analytic techniques as well as critical thinking and writing skills at various universities, global corporations, and government offices. My travels usually entailed carrying books, instructional manuals, and other course materials in a suitcase that usually weighed over fifty pounds. I recall struggling a little when I had to pull a heavy suitcase up a long hill in Barcelona, Spain, en route to my hotel. That prompted me to start using my Alvesco inhaler again, but it did not make much difference.
In June, while attending a conference in San Diego, I took advantage of the perfect weather to run outside a couple times to see if it was easier in a different climate. I even used the spirometer to monitor my performance, but, despite the change in venue, I experienced no relief.
In mid-August 2013, I stopped using Alvesco or any other long-term inhalant. I tried for two months to run with a spirometer to test whether the breathing problem could be exercise-induced asthma (see Figure 5). I measured my lung capacity about fifty
Figure 4. Testing Lung Capacity on a Treadmill
times before, during, and after running, both at home and on business trips to Tucson, Arizona, and El Paso, Texas. I did not record any significant findings, and little changed when I started using the Alvesco inhaler again in late September.
I reviewed my situation with my family doctor. We were running out of specialists to query about my condition. She suggested that I submit my case to the Undiagnosed Diseases Program run by the National Human Genome Institute at the National Institutes of Health and Office of Rare Diseases Research. This would require me to prepare a case history that my family doctor could augment with relevant test results and other paperwork.
If the program agreed to take my case, the process would be to distribute my narrative and test results to a large pool of doctors representing a broad range of specialties who would collaborate in exploring my symptoms and medical test results. My family doctor had used this procedure successfully once before for another patient. It took me a couple weeks to pull all the details into a single narrative (which forms the basis of this chapter). I submitted the application in August 2013. It wasn’t until February 6, 2014 that I received confirmation that they had received my letter and would review my application.
In late February 2014, I was back in Barcelona with my wife conducting a Train the Trainers workshop at a local university. After almost a week in the classroom, we spent a day sightseeing. I vividly remember having difficulty climbing a long hill. Halfway up the slope, I turned to my wife and said, “If you did a straight-line projection on my ability to breathe, I think I could be dead in one or two months. Obviously, life does not move in straight lines, so I probably have more time than that, but I really am becoming concerned.” To be fair, my condition did not prevent me that day from walking twelve blocks through the Old City while lugging eight bottles of Catalonian wine, which we carried back in our luggage to the United States.
As noted in the Preface, on Friday, March 7, I fell short of breath walking to the meeting at the State Department. I decided that I needed to visit my family doctor as soon as the weekend was over. On Saturday, three other runners in my club and I set out from my home with twenty pounds of flour to mark a five-mile trail that the rest of the runners would follow that afternoon. We were out for over two-and-a-half hours setting the trail. I was able to guide my colleagues on how best to set the course but was having difficulty carrying flour and could only walk, not run. That afternoon, over thirty runners showed up to run the course, socialize afterwards, and celebrate my sixty-fifth birthday.
On Monday, March 10, I went to see my family doctor. She took one look at me, asked a few questions, and told me to drive directly to an emergency room. On the morning of March 12, I underwent major surgery that saved my life.
The next three chapters document the lessons I learned from trying unsuccessfully for five years to get a diagnosis of my condition. My saga involved working with a dozen different doctors representing six different specialties and trying over a dozen different medications. In the process, I learned a lot about the state of medical practice in the United States and what can be done to improve your chances of surviving. If you want to cheat, you can jump to chapter five to learn what transpired at the hospital and afterward.
Five Techniques to Spur a Correct Diagnosis
During my five-year odyssey, I noticed a constant tension between the temptation for doctors to start treating the illness versus taking the necessary time to diagnose it. Usually, the default was to treat. In general, this strategy usually turns out to be successful because of the following:
1.In a high percentage of cases, the human body will eventually cure itself. If you visit the doctor, a treatment is usually prescribed, but, at best, it may only be expediting the recovery process.
2.Most illnesses can be treated successfully with just one or two treatments.
But what if the problem is more complicated? Given such strong incentives to treat and not diagnose, many of us who have unusual and hard-to-diagnose conditions become frustrated. Our lives become littered with unending visits to doctors’ offices, myriads of tests, and a series of unsuccessful treatments. If we die, no one usually will notice that our illnesses were undiagnosed. Our families are grieving; they already knew there was a problem and usually feel impelled to just move on.
What tools or techniques are available to this minority of undiagnosed patients, whom I call the forgotten “5 percent?” How can they get the attention they deserve? This chapter presents six Structured Analytic Techniques (SATs) they can employ to focus more attention on the need for a diagnosis.2 It describes when the techniques are most useful, what cognitive biases they help to correct, and how they were—or could have been—used in my case. The book also contains examples of how these SATs were used correctly with good results, as well as examples when they were not applied—with serious negative consequences for the patient.
SATs were developed in the late 1990s to provide more rigorous, transparent, and