I was diagnosed with sarcoidosis not long after my mother passed away in 2003, and it was totally by accident.
I was having a conversation with a pulmonologist about participating in a sleep study. During the meeting, he talked about breathing issues and other conditions related to sleep apnea, asthma, and overall pulmonary function.
I never had asthma, but my mother did. My brother also has it, so I absorbed the information to share with him. Strangely, the pulmonologist then asked if I had any skin blemishes or “itchy” patches on my body. I told him I did and showed him some patches on my legs. He explained what a granuloma is and suggested we schedule a bronchoscopy to test if it was in my lungs.
The results confirmed the doctor’s suspicion.
From my initial diagnosis until recently, my symptoms didn’t really affect my day-to-day living. Before spring 2017, I often rode my bike in the park, walked over a mile at a time, and swam two or three times a week. From 2004 until 2013, I worked as a freelance video producer and editor, a photographer, and a part-time Department of Homeland Security officer. In late 2013, I secured a full-time managerial position in video production until the company downsized in 2016. During all of this, I did not experience any severe issues related to sarcoidosis, aside from some breathlessness during lengthy physical activity. But this lack of symptoms changed rather abruptly.
At 53, I didn’t see this coming
My journey with sarcoidosis has peaked over the past 20 months.
In August 2017, I awoke with my first primary spontaneous pneumothorax. I’ve been hospitalized six times since then as a result of sarcoidosis in both lungs. My longest stay was two months. I’ve had three other spontaneous pneumothoraxes, resulting in eight chest tubes, two pleurodesis procedures, three endobronchial valve placements, bleb removals, and a bullectomy.
My last hospital visit landed me in pulmonary intensive care due to crepitus (crackling sounds and sensations) caused by an air leak in my right lung that trapped air beneath the skin of my chest, both arms, and face. The treatment included a breathing tube insertion and several small cuts in my skin to allow air to escape. My son took a picture of me, but I don’t think I’m ready to see that yet — the mental scars are still raw.
I had a plan and life ‘mocked’ me
The one thing sarcoidosis does not like is a body that moves. I’ve always been an active person, and during the times I was hospitalized, the one thing I understood well was that I had to keep moving. That was a challenge when I had one or two chest tubes and was connected to supplemental oxygen. I was lucky to have nurses that encouraged me to get up and move, even when I didn’t have a physical therapist to walk with me. I made the best of my situation and found “creative” ways to move my body.
Living with sarcoidosis is a challenge, as anyone with the condition will tell you. It robs you of breath, some freedoms, and relaxation. Some people experience more severe issues than I have. However, the one thing sarcoidosis doesn’t — and shouldn’t — rob a person of is self-worth. Every day, I must have the mindset and determination that, “I’m going to make this a great day!” Every day should have a purpose. It’s easier said than done, but it is doable.
Life has been a roller coaster ride. I’ve been on the “rehab rebound” for the past seven months, and some days are better than others. I’ve had more accomplishments than setbacks. I see my pulmonologist every month, and I do a six-minute walk test to see how much oxygen I need when physically active. I go to the gym two to four days a week (with my oxygen, of course) and I try to retain some normalcy in my life.
I’m so very grateful that I’m still living life, laughing, and enjoying my family and friends. Every day, I look at my scars in the mirror to remind myself where I came from and to embrace where I am in my healing journey. I have a whole lot of life left to live, and I’m going to make sure that everyone I encounter knows that my situation doesn’t define me. I’m still living! I’m still here for a reason!
So, regardless of the circumstances or what people think about my disability, they’ll never understand how grateful, humbling, and exciting each new day can, and will, be.
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 pulmonary fibrosis.