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Resolving to Save My Own Life, One Step at a Time


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banner image for "No Tears for Sarcoidosis" by Charlton Harris

A new year means new resolutions.

I start every year with good intentions to do better than the year before, but I made a few resolutions last year that I haven’t fulfilled. That doesn’t mean I didn’t try; life got in the way and made some more difficult to complete than others.

Having pulmonary sarcoidosis means life gets in the way quite often. Sometimes I’m out of breath, and other times I ask, “What’s the point?” It’s hard to stay motivated while trying to improve your health. For me, it’s been a five-year challenge.

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller

Five years ago I experienced my first spontaneous pneumothorax, or collapsed lung, and spent two months in the hospital. The following year I experienced another and was hospitalized for two weeks. Over the next year, I was in and out of the hospital due to the effects of the pneumothoracies and pulmonary sarcoidosis. Needless to say, I had no real goals other than trying to stay alive.

I then completed two sessions of pulmonary rehab, which I believe was the catalyst in helping me find my motivation again. I’d never realized that breathing issues can have a serious effect on your quality of life. Mine made simple things challenging, including walking heel to toe, standing on one foot, and walking in a straight line.

Daily tasks, such as hygiene, were also affected by my lung function. To my therapist’s surprise, I showered while connected to my oxygen concentrator. My motivation was to stay alive by any means necessary. By participating in the rehab program and joining a gym, I felt like I was starting to make some progress. And then the other shoe dropped.

Three years ago on my son’s birthday, I was told I wasn’t a candidate for lung transplant. At the request of my pulmonologist, I sought a second opinion. The same determination was made. So much for feeling motivated.

Sometimes you have to take a step back and listen to what’s being said. The doctors told me I wasn’t a candidate for transplant, but I interpreted this to mean that nothing else could be done for me. Their decision terrified me, and then the pandemic hit. Now I had to live with even more fear.

After several months of lockdown, I was finally able to see my pulmonologist again. I told him that I hadn’t been exercising as regularly due to COVID-19 and had lost whatever progress I’d made. I couldn’t go to the gym, so my only recourse was to rehab at home. He scheduled me for a six-minute walk test.

I required 11 liters of oxygen to finish the test. I was crushed. That was the moment I realized that if I wanted to stay alive, I had to fight for myself.

“Do one thing every day that scares you.” ― columnist Mary Schmich

The doctors who offered me a second opinion about a transplant felt that I was too frail for post-surgery rehab. That angered me more than anything I’ve ever experienced. Requiring 11 liters of oxygen to walk was unacceptable. I had to motivate myself because no one else was doing it. I was it.

Every day I pushed myself to go to the gym and walk on the treadmill. I was finally able to walk a half-mile using 4 liters of oxygen. I could live with that, but I knew I could do better. I even started lifting some weights. My theory was that I had to keep my frame strong to carry my body.

Three days before New Year’s, I did another walking test. This time I only required 2 liters of oxygen. I thought the pulse oximeter was off, but the therapists reassured me that it was working correctly. I became even more motivated. I felt like I was getting part of my old self back. I was accomplishing the biggest task I’d ever been faced with: saving my own life.

Now, with 2023 in full swing, I have a year of adventures ahead of me. Staying motivated is tough, but the rewards are great. Every day is a new adventure; just hang on and enjoy the ride.

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, and are intended to spark discussion about issues pertaining to sarcoidosis.

The post Resolving to Save My Own Life, One Step at a Time appeared first on Sarcoidosis News.

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