I saw the specialist at a leading institution last week. (Not the doctor in the picture, who is a random allergist/immunologist.) It went about as well as can be expected. But I don’t have any answers yet.
The specialist sent me for more testing. More blood samples. More urine samples. (This will be my third 24-hr urine collection.) Some tests are repeats (for verification). Others are new. One of the blood sample vials went directly into a bag filled with ice, since the component being examined is highly heat-sensitive. First time I’ve seen that.
While I was at the leading institution, I also had a spirometry test. This test measures how well your lungs are working. It measures how much air you inhale and exhale, and how quickly you exhale.
I didn’t quite grasp how the test was supposed to work at first. The assistant handed me a nose pincer that looked like two ear plugs on the ends of a clamp.
These are used to keep any air from escaping through your nose.
Then the assistant handed me the hose (with attached mouthpiece).
(I did not get to look at the display as the person in this image is doing.)
I was told to put the nose pincers on my nose, get a good seal on the mouthpiece, and exhale for 6 seconds. This is the part that I did not understand.
I thought that if I needed to exhale for 6 seconds, I needed to pace myself. So I was gradually exhaling. Apparently this is incorrect, because the test also measures how quickly you exhale, and I was told to exhale as hard as I could.
The assistant guided me through breathing “normally” through the mouthpiece for several cycles, then told me to take a deep breath, exhale hard, and keep exhaling until I was told to stop.
After a forceful exhalation, I didn’t feel like I had enough air left in my lungs to keep exhaling for 6 seconds, which is what I told the assistant.
I was told to keep a good seal with the mouthpiece and keep exhaling until told to stop, regardless of whether I felt anything was coming out.
We needed 3 good cycles of measurement.
On the first cycle, I exhaled hard and exhaled some phlegm. I tried to keep exhaling without sliming their machine. This may have compromised my performance. (Didn’t mention this to the assistant.) (Mouthpieces are sanitary, and are swapped out between patients, in case you were wondering.)
On the second and third cycles, I exhaled hard, and then felt like I ran out of air quickly. I gave my best effort at exhaling for the entire 6 seconds, as the assistant was shouting, “Keep exhaling! Keep exhaling!” But I felt like no air was coming out.
Also, the nose pincers were sliding around on my nose, and I was concerned they would slide off, which was distracting.
Overall, the test was not difficult, nor was it painful or uncomfortable in any way. You just sit in a chair and blow into a tube. It is not difficult to inhale or exhale through the device. It does not constrict your breathing.
But I thought I had failed the test. I thought I should have been able to exhale noticeably the entire time.
Imagine my surprise when I was told that my “expiration” was better than normal!
This means that I probably do not have asthma, COPD, or other breathing conditions. (I was not expecting to have any of these conditions, although it could have been possible to have allergy-related asthma.)
So today I am doing the 24-hr urine collection, and waiting.
I have a follow-up with the “expert” specialist in 8 weeks.
The specialist also gave me a prescription for another medicine to add to the ones I’m already taking. If Tricare will approve the prescription, I can see how that works, and report back to the specialist at the follow-up appointment.
Bottom line: Saw the specialist. Was told my hypothesis was worth exploring. Was also told my symptoms are very difficult to diagnose, and we may never reach a diagnosis. But the specialist is interested in helping me improve my quality of life. The tests that were ordered make sense for an exploration of my hypothesis, and so does the new prescription. The specialist was knowledgeable and empathetic.
So I am currently standing by to stand by.