I Became an Orphan

Imagine my parents' surprise when I told them I was an orphan!

Way back, when I was still using continuous enteral feeding (1995), Dr. Barnett at London Health Sciences Center, did something invaluable. He was completely honest with me and said, 'Christine, this is the best that I can do for you. You are young, with a young family. If you'd like, I will refer you to a colleague who is doing some research. He may be able to help you return to a more normal life.' I didn't know it then, but he was treating the whole patient, not the disease.

We understood that it was research. Nobody knew if the technology would resolve my gastroparesis. But, we had nothing to lose and everything to gain. I didn't understand the physiology of gastroparesis. I knew the symptoms: nausea, vomiting, pain; and these disappeared when the pacemaker was turned on. They returned immediately and as strong as ever, when the gastric pacer was turned off. It wasn't without its glitches (defective pacemaker, programming loop problem), but my life turned around with the pacer. I had no need for a feeding tube. My stomach was working; I felt well. I was following up with the doc every 6 months; interrogate the pacer; see ya' later.

When the doctor moved to a different hospital, I didn't think it would change my care plan. But when he took a sabbatical, that began shortly after I started experiencing problems, well, that changed everything. Just weeks after his sabbatical began, I heard rumors that he wouldn't be returning. And he didn't.

It slowly dawned on me that I was an orphan. I was a patient with a pacemaker, without anyone to maintain the device. Truly, I was orphaned before he left. Because I'd been so well, we didn't maintain the pacemaker the way we should have. We'd been too quick to dismiss pain, for example, that may have led to a fluoroscopic investigation that may have revealed erosion in the leads. May have. Hindsight being near-perfect, and all.

Would it have made a difference? I'll never know.

Funny, the things you take for granted when you feel well.

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