Recently, I thought about my past hospitalizations and how isolated I felt. I guess the events over the past three months with social distancing had me feeling isolated … again. I thought about the two months I spent in the lung center at one of our hospitals in Philly to treat my first spontaneous pneumothorax, caused by pulmonary sarcoidosis.
Initially, the doctors thought I would be hospitalized for about a week or so. They thought that my lung would start to heal itself, which is common with spontaneous pneumothorax. Frustratingly, that wasn’t my case because my lungs were in pretty bad shape to begin with. During that time, I had a chest tube placed to inflate the lung and help me breathe. According to doctors, I was making progress and we had conversations about going home. That all changed rather quickly. I was taking my daily walk with the physical therapist when I suffered another spontaneous pneumothorax — this was a big setback for me.
After that episode, another chest tube was put in place so now I had two. Over the next few days, I could sense the isolation setting in. Being alone and watching television for most of the day became my routine. I started worrying and thinking, “How long am I going to be in here?” The days became weeks, and I started thinking, “Am I ever going to get better?”
My family came to visit almost every day. Some friends and other family members routinely called to check on me. Those welcomed gestures really helped, although I didn’t hear from several of my close friends. I started feeling vulnerable.
Days turned into weeks … and those weeks turned into months. Every day I made little progress. The longer I stayed, the more of a challenge it was to remain focused and optimistic. It’s not easy when you’re tethered to oxygen while trying to navigate two chest tubes, which the nurses called “pocketbooks.” I can say from experience that lengthy hospital stays cause anxiety.
Sarcoidosis causes anxiety, too.
What I would’ve liked to have happened.
I wish I had a mental health professional to talk to about the isolation of being hospitalized. Albeit, I had several nurses and a respiratory therapist who were wonderful to talk to because they work with lung patients every day. It was easy for them to explain what was happening to me; moreover, they could tell me what to expect during my rehabilitation.
I also spoke a few times with a hospital social worker. Our conversations were usually about my medicinal needs, my oxygen provider, equipment needs, and whether I felt safe in my home with my family. I also had a few conversations with the dietician about nutritional needs.
Although everyone involved in my healthcare was equally important as the next, I do wish I could’ve talked to a therapist while there.
I had both of my spontaneous pneumothorax during the summer months, so every year since, I’ve experienced a lot of anxiety during those months. The summers of 2017 and 2018 were spent in the hospital, so I definitely think warm weather is a trigger. I’ve gotten better about handling that anxiety, but I think a therapist could’ve helped me to overcome that issue earlier.
A therapist also could’ve helped me understand that my life would change because of my health. Maybe they could’ve helped me understand that some people would treat me differently. I’m sure one thing they could’ve helped me understand is that none of this is my fault. I still have a lot of life to live.
Time to move on!
Eventually, I did speak to a therapist in the weeks following my release. I didn’t know at the time that it was a benefit of my wife’s health insurance. We talked about some of my concerns, and she was helpful in explaining that my current health issues with sarcoidosis weren’t my fault; it’s not personal, I guess it’s just the luck of the draw.
The therapist mentioned that I had been through a lot in a short period. At that moment it registered with me that I had been through a lot. I remember the nurse practitioner saying the same thing to me, which made me pause and reflect on everything I had experienced.
The hardest part of living with a chronic illness is staying motivated to move on. You have to keep moving forward because you still have a lot of life to live. It’s easy to mentally remain in the past, the hard part is confronting your fears and moving on. Get out of your comfort zone. The best life is ahead of you.
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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