Upon my return to Hawaii from the Mayo Clinic, I began working on getting a new gastroenterologist — one that my rheumatologist recommended. He was weeks out on first-patient appointments, so my rheumatologist recommended that I stay with Imodium Asshole (going further, we’ll call him I.A.) until I could get in with the new doc. She was equally as upset with I.A. as I was because, during that entire hospital stay, he never consulted with her about the course of my treatment — which is a simple professional courtesy to involve other specialists when caring for the same patient. We agreed that I needed to see the new doctor, but in the meantime, she told me to “play nice with I.A. and get my Entyvio infusion from him and we’ll go from there.”
However, what we didn’t expect, was that I.A.’s ego would be so bruised by my going to the Mayo Clinic that he wouldn’t follow their direct orders put in place for my care.
Upon my return to Hawaii, my Mayo doctors immediately faxed my treatment plan to Imodium Asshole. He had ten days to fax the prescription for the Entyvio to the infusion center at the hospital but didn’t do so until 3 PM on Friday, when I needed the dose that Monday. Further, although my insurance company had already approved the pre-auth for the Entyvio, the infusion center was certain that the pre-auth wouldn’t transfer from Mayo to the hospital in Hawaii and that they needed to re-submit a new pre-auth.
I argued with them from Friday afternoon to Monday morning, telling them that I would agree to sign a waiver to pay for the $12,000 medication out of pocket in the event that my insurance didn’t agree to an unnecessary second pre-auth request (which I knew the insurance would, since they already approved it). They argued with me tooth and nail and said that they did, indeed, have those waivers, but, “let’s be honest, you aren’t going to actually pay it if turns out insurance doesn’t come through.”
I turned on the Jersey ‘tude hard and unleashed my Inner Millennial Entitlement to Healthcare all over them. I knew that if I didn’t get my next loading dose at the right time, I could be dealing with yet another biologic that wasn’t going to work for me, and knew it needed to happen on the prescribed dosing schedule — but the infusion center continued to argue and said it could be another week before I could get it by the time they got their pre-auth.
Then they argued that they didn’t even have a bag of Entyvio for me and that there wasn’t any on the island and that it needed to be shipped.
I raised more hell than they are probably used to dealing with, and eventually, they agreed to give me the infusion that Monday… (suddenly having the bag of Entyvio that they previously needed shipped in).
The only problem was that I.A.’s ego had been so bruised that he didn’t follow the orders for proper pre-meds prior to the infusion.
As the nurses began preparing me for the infusion, I paid attention to my pre-meds, and noticed that something was off — it seemed like a pill was missing and I didn’t see the IV Solumedrol, but I ignored my gut, because this was a pretty standard pre-medication process, and surely even Imodium Asshole knew how to properly pre-medicate a biologic infusion. I felt like I had already ruined their days enough with my demands for my medication that I felt a little uncomfortable by now questioning things further — so I squashed my gut and thought maybe I just missed it, and I let it go.
A few minutes before the reaction began
About fifteen minutes into my infusion, my heart began to race uncontrollably — it was suddenly at 160 BPM while I sat in my infusion chair. Sean called over a nurse, they stopped the infusion, and had me lay down in a hospital bed in the infusion center. I asked how they pre-medicated me, and they said that they followed I.A.’s orders: 25 mg of Benadryl and 2 Tylenol.
Proper pre-meds for this infusion are 50 mg of Benadryl, 40 mg of Solumedrol, and a gram of Tylenol. I.A. said that he didn’t include the Solumedrol from the get-go because he thought it was an “unnecessary precaution” and that he “didn’t think I needed it” because I was on Prednisone and that he thought half the recommended Benadryl would be enough.
He then wouldn’t send me to the ER downstairs to get checked out; instead, he instructed the nurses to give me the Solumedrol now, after the fact, as well as an additional 50 mg of Benadryl. So now, I had 75 mg of Benadryl in my system and was completely overloaded.
My body began shaking uncontrollably, my heart rate elevated further, and I couldn’t catch my breath. Sean got I.A. on the phone and told him he was an incompetent *expletive* and going to kill me, and that this wouldn’t be the first time he almost did, and that we were no longer under his care and would be going to the ER.
Things didn’t go much better in the ER, unfortunately.
We got into the ER sometime around 4 PM, where they attached me to all kinds of wires to do an EKG, but struggled to get a reading because I couldn’t hold still. I was moved into a room and sat for more than eight hours, shaking like a leaf. During that time, they continuously loaded me up on Ativan, saying that would stop the shakes, which it did not, and when they realized it wasn’t, they gave me more.
By midnight, they had given me 4 mg of Ativan via IV, and I continued to shake, heart elevated still, only now I was telling Sean all about the pink elephants that were roaming the hall, how cute and nice they were, and how wonderful that the hospital administration let the pink elephants roam the halls to visit patients and how great that was for patient morale.
The doctor sent us home at 3 AM — with the unfinished infusion bag of Entyvio, and told us to put it in the refrigerator and bring it back to the ER the next day to continue the infusion.
Thing is… Entyvio has a shelf life… and it ain’t long.
And, really, who in the name of Hippocrates sends an infusion bag home with a patient and tells her to put it in the fridge?
Morning after Entyvio reaction, right before heading back to the hospital
We returned to the ER the next morning, Entyvio in a cooler, with my Mayo doctor on speakerphone. He unleashed on the ER doctor for sending the Entyvio home with me, for not properly dealing with the reaction the night before, and then called I.A. to let him have it. He instructed them to throw away the Entyvio as it was no longer safe to administer, and instructed me to see a cardiologist because he worried that I may have an arrhythmia from the reaction since my heart rate had still not stabilized. He asked why I wasn’t given an MRI as a precaution since I still had blood clots in my arms and my reaction also aligned with a possible embolism, which it wasn’t, but he wanted to know why that wasn’t pursued to cross off the list.
As he ripped into the staff on speakerphone, the room filled up with people from the hospital administration, nervously scribbling notes.
Weeks later, on our way to the new gastroenterologist, we passed I.A.’s office, and Sean said he wanted to go in, smack him right in the face with the Hippocratic Oath, and when he responded with, ‘OUCH! WHAT WAS THAT FOR?’ Sean could look at him and say, “25 milligrams of Benadryl and some Imodium, you’ll be fine, asshole.”