Beware of the Leopard

“But the plans were on display…”
“On display? I eventually had to go down to the cellar to find them.”
“That’s the display department.”
“With a flashlight.”
“Ah, well, the lights had probably gone.”
“So had the stairs.”
“But look, you found the notice, didn’t you?”
“Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.”

Douglas Adams

On October 19th, I reached out to my GI and after confirming the date of the procedure and what the nutritionist and I had decided vis a vie formula, I asked “What I don’t know is whom I should be discussing things like what supplies I need and how to go about getting them.” It is now November 20th, two days away from getting my tube, and I still don’t have a final answer. Here is my story.

On October 20th, my GI responded with this: “Do you know, or can you contact your insurance to find out, with what home care company you can get services? They are often the ones who obtain supplies after we order them.” ​ ​

And that, my friends, is where things start go off the rails.

In order to find out where he should send the order, I started an online chat with my insurance company; as you have to dig really hard to get a number to call. Knowing that my supplies would come under the heading of Durable Medical Supplies (DMS), I asked who should my doctor contact to send in an order. I got an answer, but it turned out to be the wrong one. However, not knowing that at the time, I passed it on to my doctor on 10/23.

After not hearing back, which is unusual for him, I sent a gentle reminder on November 4th. During this time, being me, I am researching everything I can and learning the relevant language. This turns out to be a critical skill. I start playing with formula intake calculators online and discover that I will need to be feeding 30 (thirty) hours a day based on what my nutritionist originally told me I should use back in October. I figure that I am doing something wrong and I email my nutritionist and ask specifically what my formula intake goals are.

It is now November 11th, and I finally get my first correct answer. It turns out that my calculations were correct and therefore we need to put me on the highest calorie formula (1.5 per ml) because between formula and water (since drinking is a miserable experience for me, we are better off insuring that my minimum hydration comes through my tube) I will end up feeding 18-22 hours a day, depending on what rate I can tolerate.

I email the doctor the revised formula Rx and call the office as well because I have not yet seen an Explanation of Benefits on my insurers website. I am told that the doctor faxed the order. I tell them that I sent him an email with the corrected formula.

Eleven days to go and still no answers. I start another chat with the insurance company, where over the course of a couple of hours I get bounced from Specialty Prescription to Home Prescription before I finally get a phone number for Medical. The woman who gave me the phone number also told me exactly what to say. She said to ask for Enteral Feeding.

Turns out, I prefer the chat to the phone because between my various transfers, I had to repeatedly spell enteral. Nobody has the slightest clue what I am talking about. Finally, someone asks for the order approval information. It is then that we determine that there is absolutely no order in their system at all.

It is now Thursday, November 17th and we are down to the wire. I call my GI’s office and ask them to email me the order and I will make sure it gets to the insurance company. Mind you, I still have no idea where to actually get the supplies. It is then that I learn that there is a note saying that the order was completed and faxed in, but there is no order in the system. And, there is no one in the office who knows how to put together an order for enteral supplies. Oh, and they have no clue where I get the supplies. It is the end of the day, I am exhausted and plan to get up early the following morning to pick this back up.

Friday morning, I call the insurance company again, committed to staying on through as many transfers as necessary to get a list of durable medical supplies suppliers. At long last I get a list of suppliers emailed to me. It was clearly formatted by drunk monkeys because the categories aren’t organized by anything I could identify. And categories appear more than once, so I had to go through the full seven pages to get my list.

Hazzah!! Now we are getting somewhere. I call the very first one on the list. I have been working with DMEs for years because that is where I get my CPAP and supplies. I am now feeling surefooted for the first time. It took two transfers before I made it to enteral feeding*. The promised land!

The woman who answers the enteral line is incredibly kind and went out of her way to help me after I told her my tale of woe. We were all ready to set up an account for me, until she asked for my insurance. Turns out that they no longer take my insurer. This despite them being the absolute first on the list sent to me by…my insurance company.

She was still a balm as she talked me through exactly what needed to be on an order so I could dictate it to the staff at my GI’s office to be submitted for me. She also referred me to another DMS that she thought took my insurance. She even gave me a direct number to their enteral department.

It is now Friday afternoon. I am getting panicked, I am exhausted and frustrated and I start to wonder how important actually using my feeding tube is. I remember that I want to have a life, pull up my big girl pants (which were MTV pajama bottoms at the time) and call the second provider. First thing is confirming that they take my insurance. Then I ask if I can still get my supplies by Monday and she says yes. I make sure to get the fax number to send the order to.

I call my GIs office. Talk them through putting together the order and give them the fax number. They need to get a doctor’s signature and she makes a note in my record to call me once it is faxed. I give them an hour. No word. I call the DMS and they have not received a fax. I call my GI’s office and they confirm that the fax was sent, but resend it anyway.

I call the DMS back. They have not received the fax, but oh, by the way, they need between 1 and 3 hours after receiving an order to get it into their system. It is 2:30pm on the Friday before my procedure. I ask how long they are there today. I am told until 8:30pm.

At 5:30 I call them back, they have the order and get me set up as a new client. She tells me to call back next week to speak to the person who actually fulfills the orders. I ask if she is there now and am told, that those staff leave at 5pm. I guess I should have specified?

It is now Sunday afternoon. I am on a clear fluid diet starting tomorrow so my stomach is clear for the procedure. That means that my calorie deficit will be even worse than usual. And I won’t be getting any actual nutrition. Which would be fine except that I need all of the energy that I can muster to see this through to the end.

Tomorrow morning at 9am on the dot, I am calling the person who actually fulfills the orders. It could be a simple call. But based on my track record thus far that seems unlikely. What I do know is that at 8:30am on Tuesday morning, I will get a hole cut into my stomach and they will insert a feeding tube and hopefully, in fairly short order, get to be a functioning human again. I just hope that I get to start using it sooner rather than later. It has been a very long 2 years of serious undernourishment.

*I envision the enteral department being located in the steam pipe trunk distribution venue.