Knowledge Is Power When Dealing with Sarcoidosis

The first month of the year has been an eventful one for me, to say the least. I spent much of January taking tests to evaluate my current health status and visiting the various doctors on my team. It has been a busy month for my wife, too, as she accompanied me to many appointments.

Last week, I met with my pulmonologist to discuss the results of my tests and potential therapies. Sarcoidosis doesn’t take a break after you’ve been diagnosed. During the first week of 2020, I had 62 blood tests, eight lung imaging tests, an electrocardiogram, an echocardiogram, a cardiac stress test, and pulmonary function tests. Needless to say, my medical team now knows everything about me, including what I want to be when I grow up! 

Before I attended my follow-up appointments, I logged on to my hospital account to take a look at my results. By all accounts, I’m in very good health except for my lungs. I was amused by one of the blood test results showing that I had no illegal drugs in my system — not that I was worried about that, but it confirmed that they do test for everything. 

At my initial consultation with my pulmonologist to evaluate me for alternative therapies and treatments, I told him that I wanted to know everything I could possibly know about the state of my current health, my prognosis going forward, and what treatments would benefit me the most. The results of all the tests found that I had low levels of vitamin D and my lung function was still compromised.

I would encourage anyone with a chronic illness to have a similar conversation with their medical team. If for no other reason, at least you’ll know what’s going on with your body and the questions to ask. The tests can give you a starting point to help you get your life back on track.

No matter the circumstance, keep living

The day I went in for my test results, I met with five folks, doctors included. At each appointment they reviewed my chart and medical history, and each one remarked that I’m not currently on any medications. They were very surprised — but my wife and I just laughed and confirmed that I wasn’t on any meds. One physician expressed her surprise that I go to the gym at least three to five times a week. I told her that I have pulmonary rehab to thank for getting me back into the swing of things. As my pulmonologist has told me time and again, “Keep doing what you’re doing.”

During my hospital stay while recuperating from spontaneous pneumothorax, respiratory and physical therapists told me about the importance of moving, especially for someone with a lung disease. One therapist told me that each day you lie in a hospital bed without moving is equivalent to three to five days in your own bed.

I remember that after I had been in the intensive care unit without moving my body for about two days, they put a “fall risk” bracelet on my wrist and told me to call a nurse if I needed to get up. I thought they were kidding until I tried to stand on my own. I called the nurse after that episode.

Knowledge is power

After about an hour or so speaking with the other doctors, I finally saw my pulmonologist. He’s been my doctor for several years, probably about 10. He reminds me a little of myself, a bit quirky and somewhat of a rule breaker. His nurse confirmed my assessment of him during my meeting with her. As long as he’s been my doctor, he’s never met my wife, so this was a grand occasion for the two of them. I could tell that she took an immediate liking to him.

He entered the room carrying a fairly large blue binder containing the culmination of all of my tests. Each section had a color tab associated with it. He began reading the results — all of them were good, even some of the lung tests, but he had a new concern. Pulmonary sarcoidosis can lead to pulmonary hypertension, which if not addressed early, or at all, can become a serious issue. 

Taking the first step in keeping on top of your health can be daunting, but knowledge is key. Diet, exercise, and a well-connected medical team are needed to overcome health challenges. And a positive outlook makes all the difference.

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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.