Self-determination Led to Progress As I Dealt With Sarcoidosis Setbacks

Two years ago this week, I was in the hospital suffering from crepitus. I didn’t immediately know how serious the condition was, but it soon caused me to be intubated in the hospital’s ICU.

The same hospital had released me about a week or two before that episode, so to say I was concerned is an understatement. I thought maybe the summer’s heat and humidity had caused me some respiratory distress — which they had — but when I started to develop pockets of air trapped under my skin, I was alarmed. By the time I was ready to go to the emergency room, my chest had ballooned, and I could feel the air traveling toward my shoulder and arm.

When I arrived, the nursing staff got me situated and comfortable. I remember doctors commenting that my condition was “impressive.” Although doctors didn’t immediately know what was happening to me, I remained calm. My son, who had taken me to the hospital, was a little excited. My wife, who my son had picked up and brought to the hospital, was shaken.

Then the air started traveling to my face. I was still calm, but I knew it was getting serious.

Here we go again

After several hours of CT scans, X-rays, and various consultations with other doctors, everyone agreed I had a small air leak in one of my damaged lungs. I thought, “Here we go again!” I envisioned weeks in the hospital, chest tubes, and the dreaded daily blood draws at 5 a.m. 

Because the air leak had started moving past my neck to my face, doctors decided to intubate me to protect my trachea. I was awake when they placed the tube, and I can say from firsthand experience that it’s really not a fun procedure. 

As it turned out, some of my fears were unfounded. I did have to get another chest tube and an endobronchial valve in my lung, but once they removed the tube from my throat, everyone thought I would return to my normal way of living. I was hospitalized only for a week.

The day I was released, the doctor came in to remove the chest tube. I’ve become used to the procedure, but it’s still an awkward feeling to have it done. The doctor described the procedure, and after a short conversation and some breathing techniques, he removed the tube, stitched me up, and I was on my way. I can still remember how it felt to have the tube removed. 

It was a job well done!

A coincidental reunion

My pulmonologist had referred me to a specialist in sarcoidosis and pulmonary hypertension. Pulmonary hypertension is an issue many folks with pulmonary sarcoidosis have, so routine cardiovascular tests are helpful to track the illness.

When the time came for the appointment, I was taken aback by the doctor — it was the same doctor that had removed my last chest tube. While greeting each other, we instantly remembered our previous encounter. Good thing for me he’s a likable and pleasant person, much like my pulmonologist.

We talked about my progress in the past year and some new therapies that might benefit my pulmonary hypertension. We decided on one he thought would be a good fit for my diagnosis, and then we initiated the plan. After trying the new therapy for a few months, I feel a lot better.

He also suggested I have an echocardiogram to measure the pressure in my heart. After that procedure, I sent a message to my cardiologist so that she’d be on board with everything that’s been happening. I received a message from her explaining that the echo looked good. She said the pressure in my heart had decreased, which was good news.

The pulmonologist I’d been working with for the new therapy called me with more results. Like my cardiologist, he said the pressure looked better than after my last echo in January. He suggested I continue to follow the plan, and within a few more months, my numbers should look even better.

I was relieved after receiving this news from the two doctors, like I had permission to continue living to the best of my ability. Although I have some limitations, all good news is just that — good news! Never underestimate the power of self-determination and a good medical team. Both can work independently as needed and jointly when it counts.

Now it’s time for me to get out and get into some trouble!

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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.