the bureaucracy of the medical field makes any progress feel slow

Oct 28, 2026

Our recent lesson was Gastroenterologists treat the INSIDE of the esophagus, but not the outside. I saw the GI doctor and she said the EGD scope showed all in my esophagus and stomach are normal. No problems.
Me: Wait, but the Esophagram in June showed severe spasms all throughout the esophagus – from top to bottom and from the beginning of the test to the end. And corkscrew twisting of it. That’s normal?
She said she treats the INSIDE of the esophagus. These findings are not within her scope of practice. For that I would need to see a doctor at the university level (here we go again) for a manometry test that shows the muscle strength of it.
I looked back at several different doctor’s notes and test results. All have suggested/recommended etc. that I go to a tertiary facility. Two of the GIs have said they agree with what the radiologist said in June.
Time to get really serious about asking for this particular doctor’s notes. I’ve read that I was told about the manometry and the doctor wrote that I wanted to wait. No, I never said that. I had to wait for the EGD test before we could schedule the manometery…….two different things.
I hate when doctors put words in my mouth – or, as is the case here, in my records. I also hate when what is said during an appointment is totally different than what the doctors chart. Not only is it just basically important, but my insurance company is going by what’s in the chart. Hmmmmm, I think I need to address this.
I’ve received a few phone calls from the Pulmonologist’s office. I can’t hear the phone ring so I depend on the caller ID for missed calls and the transcribed voicemail messages they leave. First time no message was left, so I had to call the office and say “Somebody” called me and didn’t leave a message, maybe you could look to see who that was. Turns out they were trying to schedule a test for me. That person isn’t available, but they’ll let her know I called. When I didn’t hear back after four hours and I was getting ready to leave the house, I called again. This time the person that answers the phone said the scheduler has to first talk to the doctor, have him look at the previous test films, look at the doctor’s schedule for availability and THEN the scheduler will call me. Ok, so I told her I wasn’t going to worry about it until then. Nothing I can do.
Friday morning I missed another call. Transcribed message on my phone just said they were calling from the pulmonary office and to call back at the number she left. No idea who called, didn’t leave me a name. I called that phone number. It rang, and rang and rang. No one answered and it didn’t go to voicemail.
Once again I called the office and told them “Somebody” called and left a message for me to call them. They didn’t answer so now here I am. The office person said it was to schedule a test. When I asked who called, I was told it was Dr Blah Blah’s scheduler. Ok, great. Do they have a name? Ahhhh, it’s Jessica, the same person that I couldn’t get through to last week. I asked if I could be connected with her. No, she’s not available. Is she in the office? No, she isn’t. Is she coming back or is she gone for the day? She’s gone for the day. When will she return? Monday
Why did I have to ask twenty questions? So now my Monday morning call will be Jessica once again.
Someone else left a voicemail that for some unknown reason couldn’t be transcribed on my phone. Nope, can’t hear a word of what was said. I think it’s something about a Rheumatologist. That’s another Monday morning issue to address.
When Mike and I were on the way to see the GI doctor, the referral coordinator called me and asked if I had gotten any additional information regarding dermatologists that were in network so we could cross each one off the list. No, I hadn’t, but I would have it for her by the next day.
Each time I tried to call her she was on another line and I could only leave a message telling them this was to give her information she asked for. After playing phone tag with the Referral Coordinator for several days regarding me trying to see the out of network Dermatologist, Dr Andrew Schemen, I decided to try to see her in person when I had my doctor’s appointment on Thursday.
I had talked to my insurance company to see what if there was a way I could see an Out of Network doctor, and explained that there are only three locations in the Chicago area that can do higher level skin patch testing and only a select few doctors are qualified to do it. She said she didn’t know there were different levels of skin patch testing. She told me that I need to initiate a “Single Case Agreement” between the doctor’s office and the insurance company. It requires the Specialists office to agree to specific billing codes, number of appointments, and agree to accept what the insurance company pays. Along with that I need my doctor to write a letter explaining why I can’t see an in network doctor. Why they can’t provide the care I require and support it with medical records.
I asked if she could provide me with the insurance company’s exact process and procedures. She couldn’t but thought that the Prior Authorization Department could. So now this phone call is transferred there.
Sometimes it’s just so darn hard to educate a person, lol.
I explained the situation and what the previous woman told me. She said that no, what I needed was prior authorization. I said, no, the previous woman explicitly said that my insurance company calls this a “Single Case Agreement” . She was pretty adamant that what I needed was a Prior Authorization and my doctor could just request it. Nooooooooo, please, could just look this up? Well, in her infinite wisdom, she told me that she’s never heard of that before.
Ok, so, if you’ve never heard of it before, it doesn’t exist? By now I’m biting my tongue. Seriously, my eyes were crossing by this time. Ok, so I asked her to please give it a try and look it up. Well, wouldn’t you know she found it? Amazing. It does exist. And…….my insurance company has a process/procedure for it as well. She read it to me. It says “Prior Authorization may also be required” Two different things.
I went online and got as much information as I could about the insurance company’s policy, procedure, process, etc. Did a copy and paste into a Word document.
I then went on to find out about the different levels of skin patch testing and discovered it’s called Comprehensive or Extended skin patch testing and that it can only be done by a select few doctors and always in a University setting. Again, copy and paste that information into that Word document
I went further and learned what billing codes are used, how there used, the number of visits this skin patch testing requires and if there are any special added billing modifiers necessary. Copy and pasted that into the ongoing Word Document.
Just because, I also looked up Medicare’s rules on the billing codes and copy and pasted that into the now 5 page Word document.
I added the information on which University hospitals in the Chicago are do this testing – Only Northwestern and University of Chicago.
So now here I am at my doctor’s office loaded for bear. I have ALL this information.
I asked at the front desk if she could get a message to Kelly, the referral coordinator, and let her know I’m there and have the information for her. She asked me for Kelly’s last name. I don’t know. She said there are 4 Kelly’s and she doesn’t know which one to call. After some perplexing looks on her face, she said she sent blanket message to all. Great, I’ll just sit over there and wait.
I then called the office (yes, the one I was sitting in) and asked to speak to Kelly, I was told she was on the phone. (hmmmm, how do you know which Kelly and how to find her?
I waited for an hour. A long hour. Then went back up to the front desk, papers in hand and asked if I could have a piece of paper to write a note to Kelly. I explained what I was giving her and said I kept a copy for myself so if she had any questions we could go over it together.
Then in talking to the person at the front desk, I said I didn’t know what kind of interoffice process they had to get this paperwork to Kelly. She said she still didn’t know which Kelly it was. And all she is allowed to do is send a message. Ok, that settles that. I told her that I appreciated everything she was able to do and that I’d like to speak to her supervisor. Not because I was upset with her, but because the required someone with a bigger signature that her, that’s all. She said she would let the supervisor know.
So off I go to have a seat and wait. And wait…And wait. Finally, the Director of the whole place comes up to me and tells me that she just talked to Kelly and that’s right now she’s on the phone with an insurance company but would come talk to me after the call ends. She asked Kelly if she wanted her to bring the paperwork I have back to her. Kelly told her no, that we’d been playing phone tag and she wanted to talk to me herself. (She gets kudos for that)
Kelly finally came out, I gave her the information, we went over it. I got the feeling that she understood it.
I waited two hours to see her.
I’m having a hard time figuring out how exactly communication works in the world today.
I feel like I have to do someone’s job in order to get anywhere.

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