Читать книгу How to Get the Right Diagnosis - Randolph H. Pherson - Страница 13

Figure 2. Three of the Many Inhalers Prescribed by Doctors

Symbicort, and possibly Flovent, caused my skin to break out in a “medicinal rash.” Little red dots started to appear on my legs and lower trunk. After using the inhalants, the itching was so severe that I could sense it within the soles of my feet and inside the palms of my hands. I went to a dermatologist, who took a biopsy and determined the dots to be a strange form of psoriasis. A patch test established that I had a contact allergy to budesonide, a potent corticosteroid and anti-inflammatory agent found in medicines used to treat asthma, including Symbicort. Other inhalants caused my skin to itch 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 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