less. I was prescribed a steroid-based anti-itch cream to make the itching more tolerable.
My pulmonologist was puzzled. She did some research to test the hypothesis that I was having an allergic reaction to something in the solvents or suspensions in the inhalers that contained the medication. She failed to identify any such element, however. I continued to use the Alvesco inhaler, which caused the least adverse reaction.
Both my family doctor and my pulmonologist were recreational runners. At one point in my treatment, I suggested that we do a three-mile run together on the weekend, and they could observe how I reacted. Both doctors liked the concept, but, unbeknownst to me, when I proposed some dates, I learned that one of the doctors was a few months pregnant. Although we all agreed the concept had promise, we were not able to make it happen.
Maybe It’s Allergies
In January 2011, I went to see our family allergy doctor. My son has a history of allergies. When we took him to the doctor at age four to test him for allergies, he tested positive to 80 percent of the substances. He spent his early life getting allergy shots and continually struggling with asthma, despite being a star forward on a Division One team in the National Capital Soccer League. So, the hypothesis I wanted to test was whether he and I shared some of the same allergies.
My allergy doctor and her senior partner ordered the standard skin prick tests. They came back showing that my only reaction was to some grasses. The fact that I was allergic to some grasses came as no surprise. I had been wearing leggings as a runner for years to guard against that problem as we often ran through high grass. I told the doctors about my experiences with the pulmonologist and the difficulties I had with some of the asthma medications. She prescribed Singulair, an anti-asthma tablet, and continued me on Serevent and Alvesco.
By April, my allergy doctors concluded the medications were not having much effect. They proposed I try a recently developed medication called Xolair. This required a visit to the doctor’s office for regular injections. Qualifying for Xolair treatments was a convoluted process. It took over half a year before I could begin my twice-monthly injections.
Moving to the Gold Standard
I told my pulmonologist I seemed to be making little progress. I hoped the Xolair treatments would be the magic solution, but I was skeptical. While we waited for the Xolair treatments to begin, we decided to take the bull by the horns. She arranged for me to see the head of the Asthma and Allergy Center at one of the best nationally acclaimed hospitals in the country.
At our first meeting, the head of the center ordered the standard set of skin prick and blood tests. I told him in advance what the results would be, but he said the center needed to do its own tests. My prediction was mostly correct. I tested positive for the same grasses, recorded a small positive reaction to cockroaches, and negative for everything else. Thankfully, my house and office showed no trace of cockroaches. Allergic reactions to grasses and cockroaches were rejected as contributing to my breathing problems.
The head of the center prescribed Proventil to use when I ran and suggested I conduct a series of self-tests. In phase one of this experiment, he asked me to measure my lung capacity twice a day using a spirometer (a tube you blow into to measure lung capacity) to establish a baseline (see Figure 3). I continued to record data for several weeks, entering all the results on an Excel spreadsheet and periodically emailing the results to the doctor.
Pherson Peak Flow Readings, August–September 2011 | ||||
Date | Time | First Reading | Second Reading | Comment |
25 August | 0910 | 480 | 500 | Walking to work in WDC |
26 August | 0900 | 470 | 480 | Walking to work |
28 August | 1206 | 320 | 330 | After 1 hour on elliptical |
2130 | 300 | 350 | After dinner | |
29 August | 0813 | 370 | 400 | Short trip to Arizona |
30 August | 0940 | 530 | 470 | |
2200 | 440 | 480 | ||
31 August | 0715 | 400 | 410 | |
2000 | 540 | 460 | ||
1 September | 0715 | 450 | 420 | |
2200 | 500 | 480 | After 1 hour on elliptical | |
2 September | 0645 | 400 | 480 | Return to WDC |
1045 | 440 | 400 | ||
3 September | 1100 | 440 | 420 | Before hiking |
1730 | 480 | 460 | ||
4 September | 1100 | 500 | 480 | After exercise |
2300 | 530 | 480 | ||
5 September | 1000 | 510 | 420 | Before exercise |
2300 | 610 | 530 | ||
Average reading | 458 | 445 |
Figure 3. Establishing a Baseline for My Lung Capacity
In phase two, I took the spirometer with me to record my lung capacity every time I ran. My doctor asked me to run until I had to stop and record the time, then record the time when I started to run again, run again until I had to stop and record the time, and repeat this process over the course of the run. At this point in my saga, I could only run 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