Following My Diagnosis, Negative Thoughts Consumed Me

Even before I received my official diagnosis of idiopathic pulmonary fibrosis (IPF), the thought of death consumed me. I had trouble sleeping. I would lie awake at night for several hours tossing and turning before finally falling asleep. The restlessness was a symptom of the IPF; the thoughts of death were a symptom of my anxiety.

I would place myself in different scenarios of dying. It seemed that each was worse than the last. The thoughts took over when I was alone. Sometimes they lasted an hour or so, and sometimes they would consume me for long periods at a time.

I never explained this to anyone, but sometimes I would make comments regarding death. My wife, family, and friends never liked it. They would usually reply, “You are too ornery to die yet.” In some aspect, though, it was my way of coping and communicating how I felt.

My first pre-transplant evaluation put me into an emotional state I don’t display in public. My wife, sister, and I were in my doctor’s office, and I inquired about how death looks for an IPF patient. He told me everything I wanted to hear and more. I lost it in the office. The looks on my wife’s and sister’s faces were equally disturbing. Before then, I don’t think my sister had an inkling of what this disease is capable of doing.

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My doctor, Wayne Tsuang, kept assuring me I would receive a transplant and saying that I should trust him. I did trust him. He was even more optimistic because of my rare blood type. That was something I could not wrap my head around.

I received the call 24 hours before I would have the surgery. During that time, I wrote a note to my wife detailing my wishes for my burial and how to request the monies she would be owed because of my death. After my funeral, I wanted her to have a party and play my music playlists that she so often complains about.

What was really bothering me at that point was that I wouldn’t be there for the party. I guess this is called fear of missing out (FOMO). Those were probably the only coherent thoughts running through my head for those 24 hours. Death was, of course, consuming me.

When I was finally settled into the Cleveland Clinic’s ICU, I was allowed visitors. When asked if I would like a priest to visit, I requested a Polish priest. A Southern Baptist pastor arrived and asked if it was OK to pray for me. I told him, “I take any and all prayers!” He spoke his invocation in a Southern drawl, which was very soothing to hear. I began to feel comfortable and at peace with the upcoming surgery.

The anesthesiologist came in next and placed the arterial line in my wrist. It was not until then that I felt I was mentally ready for the surgery. He was a younger guy who was into sports, and his bedside manner made me feel at ease. He was such a positive and motivating person, I knew I would be in good hands with him in there. This was the first time in months that I didn’t have a negative thought.

The surgery and recovery went well. I still have thoughts about death, but they are fewer and farther between. They usually come when I don’t feel well. Sometimes, I will read an alarming article that pertains to me, and I’ll immediately place myself into a morbid mental state. At these times, I usually talk to a medical professional. They reassure me, and the negative thoughts go away.

Overall, I feel I am in a good place mentally and physically. I still have occasional thoughts about FOMO. I said this to a friend the other day, after attending a funeral for another friend’s mother. He looked at me as if I were crazy, but it is what it is.

I am curious to hear your thoughts. Can any of you relate to my experiences? Please share in the comments below. 

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Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.