Breaking Up Is Hard To Do…Sort of

Eureka! Hooray! Yippee! PEG is no more. On July 5, 2022, Surgeon Dr. Ed Card “yanked” it out.  The Percutaneous Endoscopic Gastronomy is the medical way of saying “the tube.”  I went to Dr. Card’s office and waited to be escorted to the room where the outpatient procedure would take place. I was not sedated and no pain killer was needed.  I just laid back.  Ed asked, “Are you ready to do this?” YES!  No blood, no stomach contents spurting everywhere, just done, zip, fini. He put a gauze pad over the “exit” hole, and I was on my way. The tube is removed by external traction. The stomach wall heals within 24 hours; the hole in the stomach heals in a few days.  Amazing! 

The questions to be answered are what just happened and why did I decide to do it. Diane, of course, is part of all this, but like everyone else, in the final analysis the removal was pretty much my decision. This medical situation all started on July 28, 2021, when PEG was surgically inserted due to a severe case of silent aspiration bacterial pneumonia which was all recounted in Blog #21. When I reread it, the prognosis was grim in terms of the reality of life without a feeding tube. The Northwestern Medical Center in Lake Forest did what they felt was necessary and in retrospect, I can’t find fault with their diagnosis and recommendation moving forward. Yet, medicine is not always a precise science and there are multiple variables that impact on any given case. I am no exception. 

For about five months, I was the model patient but when visiting with six other doctors in Macomb, Springfield, and Burlington, Iowa, during this time, they all seemed to concur that maybe PEG just wasn’t mandatory. I had taken a couple more “swallow” tests; there was modest improvement, not total but better than back in July, 2021. Gradually I began to take a sip of water and actually swallow it and not spit it out. Then it was a bite of food until I was comfortable eating a meal a day and finally dining with Diane at night. I continued to take product via PEG in the morning and at lunch.  

Time continued to pass, more visits with doctor friends, a couple of PEG accidents when the tube cap/stopper became dislodged for one reason or another with the contents of my stomach spilling out all over the bed sheets down to the mattress pad, or all over me in the grocery store, or wherever it decided to grab my attention and let me know it was still with me.  It became abundantly clear that no doctor was going to say without reservation, “Take it out, you’ll be fine” as there is risk involved with any decision removing PEG.  But still, the consensus was there and I had to decide whether I wanted to live the rest of my life with a feeding tube or am I prepared to “roll the dice” and hope there is no recurrence of pneumonia. I opted for the latter course of action. I’ve decided to take my chances and live my life as I always did before this bump in the road, looking to the future with anticipation and not dwelling on the past. Of course, if I get pneumonia tonight and die tomorrow, please remind me that I’m an idiot.

I didn’t make this decision idly; I’ve been coming to this decision over the past three months. I had become comfortable with PEG and knew that I was ingesting nothing but nutritious fluids day after day. There was even a bit of the Stockholm Syndrome in all this; whereby, you become attached to something that you wouldn’t normally consider e.g. Patty Hearst when she was kidnapped by the Symbionese Liberation Army.  Yet, every day, I’d look in the mirror and there it was, PEG sticking out of my stomach reminding me of my connection and attachment to her. So far, I’m enjoying my new found liberation from the constraints of the past year and believe Diane is too. After all, she is the one who put in the monthly orders for product, had to endure the clutter caused by my new life, and pretty much eat alone most of the time.  

I am prepared as best as I can be for what lies ahead. The doctors tell me that if I get pneumonia again, go immediately to the Emergency Room, and begin IV antibiotic treatment.  This should work pretty well unless I’m in the Grand Canyon, Yellowstone, or walking through the south of France. Oh well, I’m an optimist and confident Diane and I will figure out whatever comes our way.  The past twelve months have seen us deal with pneumonia, PEG, (raging Restless Legs Syndrome, severe back rash, and “balls of fire”—Blog #21—associated with my treatment at Northwestern) and a cancer scare but here we are, ready for whatever lies ahead. Goodbye, PEG.