The paper crinkled beneath me as I sat on the edge of the exam room table while waiting for my pulmonary doctor. I was at the hospital for my quarterly appointment to do a few tests and check my health status. I felt pretty optimistic when I awoke on the morning of my appointment. I figured getting an update on my health would be a good way to start off 2018 and provide a standard for my follow-up appointments later in the year.
The visit began with a CT scan to capture images of my chest, lungs, and abdomen. There’s nothing quite like stretching out on your back on a long, flat surface that moves you back and forth through what looks like the mouth of a tunnel while a computerized voice from above asks you to hold our breath. The only activity better than this is when the technician asks you to roll over on your stomach to do the whole procedure again. Hold your breath. Ten seconds. Breathe. Ten seconds. Hold your breath. Ten seconds. Breathe. Luckily, there was a bright light at the end of this tunnel: I would get the results later.
The six-minute walk test, a mainstay of the PH checkup, was next on my list. This is where the wheels started to loosen on what I expected to be a positive appointment. Off the bat, the respiratory nurse had a handful of questions about the liters of oxygen I needed to do the test because her information did not match my previous test (when I didn’t need to use any oxygen). After a quick consultation with my doctor, I put on the headband to track my vitals, grabbed the tank, and walked toward the orange cone at the other end of the hallway.
I’m frustrated to report that I ate up only about two and a half minutes before the nurse turned on the oxygen. While I forged ahead and finished the walk, reporting minimal discomfort, I learned I didn’t walk as far as my September test. This came as a bit of a shock to me, and I immediately questioned whether the PH had begun to progress at a more-than-desirable rate inside my body. I know I don’t exercise nearly as much as I should, but I walk plenty and should have been able to cover more ground.
Back in the exam room, it was time to face the music and hear the doctor’s report. On the upside, the CT scan showed clearer lungs than my previous scan. Good news! The doctor also thought it would be helpful to change up some of my current medications to see how I respond over the next few months. There was concern regarding the results of the six-minute walk test, and the doctor wanted to make sure I wore my oxygen every time my oxygen saturation numbers dropped, to ensure my brain did not get used to a lower saturation. That’s not a road I want to travel.
A cloud of irritable feelings formed, mainly because I knew I could do more to prioritize my health. I’m not the best patient, and I often find it challenging to balance caring for my chronic illness with my job, and the different personal relationships and other obligations in my life. My doctor shared concerns and we talked through different things I could do to improve my health. I told him that I started going to therapy to address some of the mental and emotional fallout I experienced from adjusting to life with PH. The doctor was responsive to this development, suggesting that many people living with chronic illnesses exhibit some level of depression.
As the appointment wrapped, my doctor and I discussed next steps, medications, and tests, then scheduled my next checkup. During the car ride home, I couldn’t shake the feeling that this was not a good appointment. While not decidedly bad, it didn’t feel great. I was in the mouth of a tunnel, and the light at the end just moved further away.
I wrote last year about the value of a good PH appointment and so I felt compelled to share about this mixed one. Some might read this and suggest I stop complaining — that things are just fine. To find perspective, I’m trying to think about this one appointment in the context of those I had before, and the many appointments still to come in this PHight. As with everything in life, there are good days and there are bad days. But it is best to put our hope in more days to come.
Follow Mike Naple on Twitter @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.