How Do You Get a Rule Adopted at the NIH? You Call the Wrong Number.

My dear friend Michelle has been featured on this blog numerous times over the years. She and I created thecortisolpump.com a few years ago and I have also talked about her Plan Contingency and how it can help others in similar situations. Michelle is a current patient at the National Institute of Health (NIH).

Visiting NIH December 2021

December of 2021 she was scheduled for a rather long stay at NIH to do extensive testing. As I was looking at the flights, I realized I could join her for a long weekend. My goal was to provide a distraction for her between the seemingly endless medical tests. I coordinated it with my job and booked my trip!

Thursday, December 9th 2021 started out with a preemptive IV saline fill up at my PCP’s office. Later that evening, I caught a flight into DCA and then took an Uber up to Bethesda, Maryland. I arrived after midnight, but Michelle was able to meet me at the Safra Family Lodge, which provides onsite accommodations for patients and their families.

Exploring DC

Friday morning, Michelle had several medical tests and scans she had to complete so I worked remotely in the atrium of the building of her medical tests. Our plan was once her tests wrapped up, we would take the metro to the National Mall and explore the Capital. We made it downtown and saw the Washington Monument, the WWII Memorial, and the National Christmas Tree.

From the photos, you would never know how awful I was feeling. I was rapidly beginning to crash with my adrenal insufficiency, so our plans were cut short as our sole focus became “Get back to the NIH campus.” Once we returned to the NIH campus, we hopped on the first campus shuttle we saw. We were the only two people on that shuttle.

The First Emergency Injection

By this point, everything was a blur. I could not see, my migraine was becoming unmanageable, and I was struggling to form coherent sentences. The next thing I remember, Michelle was mixing an emergency injection.

“You are getting this now. You need it.”

That is how I received a 50 mg solu-cortef intramuscular injection into my arm, on a moving shuttle. The shuttle driver was a bit taken aback, but neither Michelle nor I cared. She then asked him when he would be stopping at the Family Lodge, as we had been riding the shuttle for a while.

That was how we learned we were on the wrong NIH campus shuttle. We were on the employee shuttle and not the patient shuttle. We thanked him profusely, hopped off, and then found the correct shuttle that took us back to the Lodge.

The Second Emergency Injection

The next day (Saturday), I was not doing better. It felt as if I was burning through cortisol and I could not rid myself of the migraine. Michelle injected me again with more solu-cortef.

While NIH is an absolutely amazing research hospital and a state of the art medical facility, it is not an emergency room. When Michelle realized that I was still medically unstable, she knew I needed to be taken to a real ER. Because neither she nor I had any form of transportation, I required an ambulance.

I told Michelle to call the front desk and request an ambulance transport. That is the protocol that I have followed in the past when I am in an unknown hotel room. I do not know the address of my location. I cannot provide directions. However, the front desk can serve as a liaison between me (the person having the medical emergency) and the emergency medical response team.

But NIH is different.

NIH is a secured government facility. I am required to pass a background check in order to access the campus. As such, NIH is considered its own independent entity, complete with an independent police force, fire station, and paramedics.

The front desk did not know what to do. They told Michelle to call 911.

All 911 calls placed on the NIH campus are routed directly to their own emergency department. There was no arguing with dispatch or needing to describe the location. They knew where we were.

My NIH Emergency Entourage

I got two cop cars, a firetruck, and an ambulance, all just for me! The ambulance was going to take me across the street to Suburban Hospital but they were not going to allow Michelle to join. Both she and I protested so much that they relented and allowed her to hop in the back of the ambulance with me.

“So you’re the patient at NIH?” the paramedic asked me.

“Uh… no… She is…” I responded, pointing to Michelle. “I’m just the friend who came up to visit her and distract her from her medical tests.”

“Quite the distraction…”

“… Yeah…”

The ER department was also confused. They could not figure out how a non-NIH patient was taken by ambulance from NIH. Why was I there? In the end, we just declared Michelle to be my sister. That seemed to placate those we interacted with.

An Overnight Hospital Stay

I was transferred from the ER floor to a hospital room for overnight observation. I don’t actually recall how much corticosteroids or IV saline I received before I stabilized. I was released that Sunday afternoon. I told the doctor that Michelle and I were going to celebrate with Thai food. She approved of our plan.

After spending the night in an incredibly uncomfortable hospital chair, Michelle had walked back to the NIH campus in the frigid cold. However, that was not an option for me. In the end, the hospital arranged a medical transport service for me. A guy with a specialized van loaded me up in a wheelchair and secured me in the back. Because he was medical transport, he could enter into the secure facility.

That Sunday evening, after a shower with a change of clothes, Michelle and I celebrated with Thai food.

I flew home the next day.

The Official Amber Nicole NIH Protocol

My own medical adventures completely stole the show that weekend providing Michelle with quite the distraction. She was not thinking about her own medical stuff when I was in an acute adrenal crisis! She later told me that she knew she was going to have to inject me when we were riding the metro back from the National Mall. It was a matter of when and not if. I am very thankful she was there.

At her next visit to NIH, she informed me that they had updated the official protocol. When you check into the Family Lodge, you sign a paper acknowledging the rules and expectations such as “no loud music” and “keep the kitchen clean.”

Well, there was a new rule revised December 2021.

“IF YOU EXPERIENCE A MEDICAL EMERGENCY DURING YOUR STAY, PLEASE DIAL 911 using the telephone located in your guest room.”

It is the Amber Nicole Official NIH Protocol.