Autoimmune Dysmotility and Me: Part Five Subtitled “Allegheny Health Network is Not Doing So Great”

Tomorrow morning, I’m heading in for my second endoscopy in about eight months. This one is supposed to attach a ph monitoring device called a Bravo to my esophagus. My procedure is scheduled with Dr. Blair Jobe at the Allegheny Health Network Esophageal Institute in West Penn Hospital.

The Esophageal Institute is supposedly among the best of the best nationally. Their mission is “Our team quickly diagnoses and treats esophageal conditions to prevent them from developing into a worse condition, like cancer.”

Well that sounds good. Dr. Jobe is renowned in his field, he started with UPMC and moved to AHN a dozen or so years ago. He’s been on 60 Minutes.

He seems really much “the man” to see for your GI issues, except that he’s more Dr. Robert Romano and not so much Dr. Mark Greene. Does that analogy even make sense these days?

And that makes me nervous.

I’m not nervous about the procedure – I’ve had a half dozen over the years and know what to expect. I actually don’t expect much because this obsessive need to redirect me back to a diagnosis of GERD is irritating. I just had an endoscopy by their colleagues over here on the Northside at AGH. I get that they need to do another to insert the Bravo, but I’m not clear on why they need the Bravo.

I’m not clear on a lot because this entire Institute is hidden behind some sort of veil of secrecy that makes no sense – they are not part of the AHN systemwide patient tools like MyChart or the 412Doctors scheduling system. And that is inconvenient, but it is also disruptive to patient quality of care.

I’ve repeatedly asked why there is a disconnect between this Institute and the larger system. Everyone points fingers and no one has an explanation. So that’s when you go to the decider, right? You ask the person who runs the whole division and is actually treating you.

Unfortunately, Dr. Jobe doesn’t check his MyChart messages. I contacted him in early November with my concerns and …<crickets> I expected that either his PA or admin support might respond to me since I was voicing concerns. Nothing. I was told on the QT that he simply chooses not to read them and that I would need to call in (defeating the purpose of online communication) and have a clerk or receptionist print out my message and hand it to him.


There’s no reason the head of an entire institute can’t check his email or have someone check it for him. That’s a huge red flag.

Why does AHN allow him to do that?

My other concern is the infamous medical disinformation process. They tell me one thing on the phone, another in the office, and a different thing when the results come in. It is a dehumanizing tactic that wears people down to compliant patients who are absolutely not engaged in their own treatment.

In the brief time I’ve been with the AHN Esophageal Institute, this happened with

  • Manometry test
  • GI Tract Pill test

Even this test, the endoscopy. I was scheduled during my initial consult. Then I realized it wasn’t in MyChart and called. The woman told me they weren’t able to schedule a specific slot for me because they had a special arrangement with the OR department. I don’t even know what that means. Then she told me I could have a 3 PM slot which I protested given the restrictions ahead of time. Also, how is giving me a 3 PM slot not giving me a specific slot? She was pretty hissy with me. She said “What if someone diabetic comes in, do you want to take their slot?” Okay, then. Finally, she said she could give me a 7 AM slot but it was three weeks further down the road. I asked to clarify how they could give me a slot in three weeks, but not when I was originally scheduled. She ignored me. Well, she told me I could go elsewhere if I preferred. LIke its an oil change appointment.

I call the office on Friday to get the details. They yelled at me because my voicemail was full even though I USE MYCHART. Then they changed my slot a few times because of the top secret deal with the OR department.

And that’s just the planning part of this test.

I’ve had to live with these symptoms for 3 additional weeks because Ms Huffy was irritated with me. One of my other tests was scheduled on the wrong date, also not in MyChart. The instructions for that test were not clear and I was told “I didn’t design the device” by the staff person. I pointed out that putting directions in MyChart could reduce these conflicts. I carried a device around for three extra days and all the anxiety that brings because of the poor communication.

I cannot believe I am putting myself in their hands. But my choices are limited. The regular GI folks have zero answers for me. UPMC has a similar institute but – come on, does anyone really think UPMC is BETTER than AHN? While I suspect they use their MyUPMC chart system, the website for this institute asks for donations.

I actually did briefly see a UPMC gastroenterologist who constantly lectured me about my weight. I told him to stop and he refused. So I left.

It doesn’t make sense that Allegheny Health Network would let a major institute just opt out of their systemwide patient tools unless the person who wants to opt out is a very big deal. In my experience as a queer fat woman with mental health issues who needed a hysterectomy, working with very big deal doctors is usually not good.

So I’ll have the test tomorrow. And then I will start looking around for other providers because I absolutely expect Dr. Blair Jobe is doing to tell me I have GERD and put me on protonic because my middle/lower GI system is skewing toward the scary autoimmune disorder that dare not speak its name. Because it has no name. I’m right back where I started.

I feel like I’ve been forced into this Bravo test and I bet they make a ton of money on it. I feel like I’m going to put on meds that I’ve already tried and continue to suffer until I find the right provider or just get really sick enough to get attention.

And a lot of that stems from this silliness about MyChart and the email and scheduling. Those are things that a good office administrator could resolve. The resistance to doing so suggests to me that the clinic and the clinic leadership is not trauma informed and not particularly concerned with anxiety or related concerns.

as for me? I’m doing okay. I can eat a bit here and there. I’m still losing weight and losing clothing that fits. I feel weak quite a bit and I notice I’m not rebounding from small things as easily – things like scrapes on my skin or muscle pulls, etc. the toll on my concentration is pretty serious. I’m very irritable and take things very personally, something my therapist attributes to malnourishment.

I guess not so okay. but maybe this latest hoop of useless testing will get me closer to a place where someone can actually diagnose me.


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