As part of the PFT, I did the six-minute walk test. I was a little nervous about it. It’s been about three months since my last walk test, after which my pulmonologist prescribed some medicine he thought would help with my pulmonary function. However, I hadn’t been taking the medicine because my insurance company had refused to refill my prescription. The pharmacist explained the insurance company needed a “recertification” from my pulmonologist. Needless to say, that didn’t happen when it was supposed to.
A few weeks prior to my pulmonary follow-up, I reached out to my pulmonologist on several occasions about not having medication. He managed to get my prescription filled, but to my surprise, once I started taking them, I felt dizzy and out of breath. These side effects happened before, so I was hesitant to contact him. I decided to slowly reintroduce the medication back into my system, but after several days, I was still experiencing the side effects, so I stopped using them altogether.
The side effects weren’t new to me. I initially experienced them when my doctor first introduced me to this particular treatment. He wanted me to take a lower dose to slowly introduce the medication into my system, but I’ve always experienced some sort of side effect. The difference this time was that I was feeling better without them.
I usually meet with my pulmonologist every three months to make sure I’m not experiencing another spontaneous pneumothorax or any complications related to my previous lung issues. After my first spontaneous pneumothorax, my pulmonologist gave me his private cellphone number and told me that if I experienced any breathing-related issues (swollen ankles, fever, mucus), I should call him. I told him I didn’t want to be bothersome, especially since I didn’t know what to expect, but he said, “I’m not worried about you. You know your body, and I trust your instincts.”
You will make progress
During the appointment, I completed my usual X-rays to see if the spontaneous pneumothorax had come back. Once I was in the exam room, I mentioned that I had stopped taking the medication. He didn’t seem surprised when I explained that, during the three weeks I didn’t have the medication, I actually felt better.
He explained why I probably felt better without them and drew a diagram of lungs followed by a step-by-step explanation of how the medication works. He knows I’m a health enthusiast, so he wasn’t surprised when I told him I enrolled in a holistic nutrition course and that some of the lifestyle changes I made seemed to help.
The real surprise came when he reviewed the results of my six-minute walk test. He told me my X-rays looked good — as good as they could with sarcoidosis — and that there was no new pneumothorax. Whew! He also mentioned that, a year ago, after I was released from the hospital, the results of my walk test showed that I needed twelve liters of oxygen to get my oxygen saturation level above 90 percent so I could finish the exam. The most recent test showed that I only needed 4 liters of oxygen, and I walked further. It was a win-win!
Trust the progress
I continue to go to the gym, which he was pleased to hear. Coincidently, the gym I go to had new machines installed, similar to those used in pulmonary rehabilitation, which was another win-win. I told him I wanted to see what kind of progress I could make on my own, having had three endobronchial valves placed, as well as two pleurodeses. He laughed and said, “You were right — you made progress!”
Trusting yourself matters more than trusting others. I’ve been fortunate to have a healthcare team built on mutual trust. I take nothing for granted because of how much progress I’ve made over the years — but I have even more progress to make.
Trust yourself and your progress. If you can’t trust yourself, who will you trust?
Note: Sarcoidosis 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 Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.