Appreciating the Things Sarcoidosis Tries to Take

[Joachim]

I’ve had an unusually difficult week. To put it plainly, the events of this past week have caused me great concern.

For the most part, I’d been feeling pretty good since the start of the year, and I had several medical tests. But lately, I’ve been feeling off and more anxious than usual. Some days the anxiety comes and goes. I’d been better at controlling it. Not so much this week.

I’ve noticed that my breathing has become more labored. I’ve been using my oxygen for the better part of the day, which is more than I had been for the past year. I only made it to the gym once this week, which is unusual for me. I did a light workout on the treadmill and left.

Although I didn’t exercise like I wanted to, I did manage to do some of the home exercises my physical therapist had shown me. But I wasn’t feeling it like on the other days. 

I know that the symptoms of sarcoidosis include anxiety and feelings of distress. I guess this was my week to experience them. I felt like I did when I was released from the hospital after the last spontaneous pneumothorax a year and a half ago — like I’m trying to put myself back together. 

Trust yourself

I emailed my pulmonologist to let him know how I’d been feeling. He suggested a chest X-ray, which prompted me to find out if I’d had another spontaneous pneumothorax.

So I asked my son to take me to the emergency room at the hospital where my lung team and a record of my condition are located. After registration, X-rays, blood tests, a breathing treatment, and seven hours of waiting in the ER, I was finally admitted and taken to my room.

I settled in, received a visit from my family, and finally started to feel a little better. I still thought my blood oxygen was low, but the monitor showed it to be fine. Nevertheless, my heart felt like it was racing — a result of the medication I took for the breathing treatment.

As my family left, they urged me to try to rest and relax. As I prepared for the end of a busy day, the doctor came in to check on me. He examined my breathing and noted that I was wheezing and sounded constricted. He suggested another breathing treatment to be administered overnight for six hours.

I mentioned that I didn’t like the medicine’s side effects, but he felt it would help my breathing and oxygen level. The choice was mine, so I did the treatment.

I felt better the next day and it seemed like I was returning to my normal self. I rested most of the day, took some meds and a few breathing treatments, and felt as if I were returning to my baseline.

Day three in the hospital was my son’s 28th birthday. I was unable to celebrate with him, so I sent him an early morning birthday text. He responded by thanking me for the sentiment and for being a cool and inspiring dad. Another doctor came to check on me while I was texting my son.

This doctor and I discussed a few things. She felt I was returning to my pulmonary baseline and mentioned tapering the meds and the breathing treatment, and possibly a discharge plan for the coming days.

But before that, I had to do some walking for a better assessment of how to improve my oxygen levels. I had already started bedside exercises, but I was anxious to walk. I must keep moving.

Maybe this is what I needed

Maybe my pulmonary hiccup and a stint in the hospital were what I needed to remind myself that although I continue living with pulmonary sarcoidosis, I must take it easy. Perhaps this was a message for me to slow down, take my time, and relax more. It’s easy to let myself go a little, especially when I’m feeling at my best while dealing with chronic illness.

Something good came out of my short hospital stay: I had a lot of time to really think about my mortality and reflect on my life and my family over the years. Despite everything, I’m still in pretty good shape. My doctors and my family members both confirmed that.

Now I realize that leaving the challenges of the past and focusing on my future will put me in better shape. I can still continue to look at my future with promise.

***

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.

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