If you recall, I have been struggling with intestinal pain, particularly when I am ingesting anything, orally or through my tube. A couple of weeks ago my GI put me on a round of antibiotics for a presumed case of small intestinal bacterial overgrowth (SIBO). There were no follow up instructions , but we had left TPN on the table as the next step.
Fast-forward to yesterday morning. I sent a portal message to my GI with an update as to my status of “better, but still unable to increase my feed.” In response, I got the following message, with names redacted.
“Your message has been forwarded to Dr. P and Dr. K who are the covering Doctors. [Your GI] is away this week and will return on Thursday 7/6. As per Dr. P, you will need to wait for {Your GI] to make any major changes because she and Dr. K do not manage feeding tubes.”
Clearly, Mary’s nudges have been paying off. I sent a portal message and someone read it and responded right away. Unfortunately, they responded with a “you are on your own, kid.” kind of message. Leaving me, and my pain and malnutrition, with no where to turn.
My GI gave me no advance warning that he would be out of the office. Which leaves me with a quandary. I can’t go to anyone who is covering for my GI because I have a feeding tube. I can’t go to Urgent Care because I have a feeding tube which makes everything the responsibility of the Emergency Room. But, the Emergency Room won’t deal with me because I have a G/J tube. I can get admitted, but they only deal with the most acute issues. If it is something chronic, they send you back to…your GI.
See the problem here? Sometimes I even forget that I have gastroparesis. Instead, I feel like my tube, Etisarap is my ailment instead of my savior. She feeds me. She is the reason I am still around to be having these conversations at all. She is not the cause of my misery. But she is the hot potato that means that nobody wants to deal with me. Leaving me out in the cold.
When my father had a very minor form of lymphoma (minor because they caught it super early–get your cancer checks, kids), he entered the world of the Cancer Center. The price of admission is high, but he entered a world where his health care was well coordinated for the rest of his life. Regardless of remission status.
I dream of getting that kind of care. A system where doctors communicate with each other and have colleagues that they can work with when a patient has medical devices like feeding tubes that they are not familiar with. That being said, I would much rather stay out of the cancer system completely. Forever. But I envy that kind of wrap-around care.
If I am struggling this much in NYC, with a plethora of doctors, imagine how my fellow tubies who live in smaller towns in the US are faring? It is not good. And it is only going to get worse. And yet, I no longer have a choice. I must live in this failing medical world.
Back in the last millenium, the 1980’s to be precise, there was a show called “The Greatest American Hero.” A high school teacher stumbled upon a super suit that endowed him with certain powers, most notably, flight. But it didn’t come with a manual, which resulted in the guy regularly falling out of the sky. He kept hoping he would get the hang of it, but every time he managed to sort of master one thing, he completely failed at the next. Friends, that is how I feel about life with Etisarap right now.
I have reconciled myself to the fact that I am on my own until I find a decent GI. I am not getting myself all psyched up about any of my upcoming GI appointments. That takes too much energy and being let down like last time is more than I can cope with. Instead, I am focusing on each day as it comes. That should give me plenty to occupy my mind.