at a ten-minute-per-mile pace before I had to stop and catch my breath. Over the course of the following weeks, I conducted the same test but used an inhalant before starting to run.
My guess was that use of the inhaler improved my breathing by 10 to 20 percent. When I checked the data on the Excel spreadsheet, it showed just under a 10 percent improvement on average.
On my second visit to the Asthma and Allergy Center, I suggested that the doctor conduct a “pulmonary stress test” on me. My idea was to strap me up on a treadmill with a few sensors and observe firsthand the difficulty I had running. For some reason, this was never done; one nurse told me that a stress test was often ordered for heart patients, but she was not aware of it being done for those with pulmonary issues. I also asked the doctor if I could be tested for a larger number of allergies, but that was deemed unnecessary. The doctor saw little reason to keep testing, arguing that the treatment would remain the same. I continued to do some self-testing when jogging until our third, and last, session.
At our third meeting, the doctor said that he had concluded that I did not have asthma. He was dismissing me as his patient and recommended that I look somewhere else to find out what was wrong. His specialty was allergies and asthma, and he did not want to comment on issues beyond his specialty. Nor did he want to recommend another doctor for me to see in the hospital. I felt like I had just hit a brick wall at the end of a blind alley.
In January 2012, I began receiving two Xolair injections every two weeks at my pulmonologist’s office. I was told it would take at least six months for the treatments to take effect and continued to receive injections until November. My lung capacity was tested on every visit. It always tested well. My self-diagnosis was that the Xolair was causing a 10 percent improvement in my lung capacity at best, but my itchy skin continued to bother me. The good news is that I thought I could run longer (for five minutes) instead of having to stop every two or three minutes.
In October, my pulmonologist arranged for me to have a Helical CT chest scan without IV contrast. In this procedure, an X-ray beam moves in a circle around the body. “Without IV contrast” means that no substance is taken by mouth or injected intravenously (IV) to cause the particular organ or tissue under study to be seen more clearly. The results were negative. The summary report on the scan described it: “No significant axillary, mediastinal, or hilar lymphadenopathy; the heart is not enlarged. There is minimal bilateral lower lobe bronchiectasis; but the lungs are otherwise clear.”
My family doctor and I decided in November to drop the Xolair treatments as they were affording little relief. I went back to using the Alvesco inhaler before exercising. Later that month, we decided to submit my case to another asthma and allergy doctor who had served as the personal physician for three presidents and had a superb reputation.
At our first session, the doctor asked if it was okay for two students to observe our consultation and take notes. I thought it was a great idea, thinking they might even contribute some out-of-the-box ideas. The doctor listened to my multi-year saga, and we discussed what alternatives should be considered. He came up with three alternative diagnoses and suggested treatments for each:
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
