Last year this week, I landed in the hospital for fourteen terrifying days.
I had an unexplainable hacking cough, bad headaches and chills. A CT scan revealed massive inflammation in my lungs.
I was immediately put on oxygen 24/7.
At the urging of my pulmonologist, tests were done for everything imaginable — from an environmental allergic reaction to Tuberculosis to even Cancer. In my mind, lung cancer topped the list as I had picked up a nasty smoking habit five months prior.
I had a surgical lung biopsy to remove tissue from my lungs for deeper testing. There was no clear answer.
After the surgery, I was in recovery for about 12 hours. My friend fed me ice chips. I made life-changing decisions as one does. From who I spend time with to how I work, it all had to change for the better. Balance would be key.
While presenting an optimistic front, I was simultaneously starting to think this would not end well. My doctor subsequently confirmed I was near death during my hospital stay.
Looking back, I’m a lucky guy. Friends and family came daily. My work team kept my business going. It’s the tremendous support that kept me fighting.
On day 14, I left the hospital 25 pounds lighter and still far from better. I was told to never return to my home because doctors concluded at the time my apartment could have been the source of my illness. That was unsettling. I stayed with my brother before moving to a new home.
The Long Slow Recovery
The next few months proved to be uncomfortable. As I was prescribed a high-does of prednisone, a steroid used to reduce inflammation in my lungs, lack of sleep and agitation were the new norm.
I was also on Bactrim, and lucky me, I discovered I’m allergic to its key ingredient sulfa. The result? A painful rash that covered 80 percent of my body. That was a set back.
As the rash cleared up and my breathing improved, doctors said I was ready to go back to work.
At this point, I believed I was on the road to a complete recovery.
I had been visiting numerous specialists to determine the cause of my lung illness.
An immunologist recommended to me by my pulmonologist discovered I have a rare genetic condition called CVID — common variable immune deficiency — that affects one out of 25,000 people in the U.S. Basically, I have an immune system that doesn’t work very well and was mostly the underlying cause of my lung infection.
There is a treatment. I was immediately prescribed monthly IVIG also known as intravenous immunoglobulin treatments, which is used to build up my immune system.
The days and weeks that follow are challenging. Headaches and exhaustion are common side effects.
It became clear I needed to take a close look at how I was living my life — especially since I would be dealing with CVID for the rest of my life.
I didn’t forget the promises I made to myself in the recovery room. I’m more selective about who I spend time with — both personally and professionally. I spend time with friends who showed up. I don’t freak out about work. I resist the temptation to overbook myself, which is hard as a lifelong New Yorker.
The result of my lung infection and living with a chronic illness is finally accepting that I’m not invincible. It’s scary and humbling, but this entire experience has kept me more present in my life, and that is a gift. I do my best to enjoy the good days, remember the tough ones will pass, and most of all — keep fighting.
Originally published at medium.com