Three a.m. My beeper goes off. Again. Ever since I got that beeper, I suspected it was bugged with a gyroscope that sensed whenever my body was horizontal. Then the damn thing would go off, jolting me out of whatever delirious sleep-like state I had managed to achieve.
“Doctor, these orders need to be signed.” Good grief, can’t they wait till 5 a.m. when I’m due back on the ward? No, not worth getting written up for cracking wise with a nurse.
“Doctor, the patient in 36-G needs an I.V. restart.”
“Doctor, the patient in 26-G has a fever.”
It wasn’t long before I had one thing figured out: “Doctor” is not a title of honor: it’s a generic substitute for “Hey You.” So I rolled off the hard call-room cot and went to do my duty.
But that particular morning at three a.m. it was a different kind of page. I had actually fallen asleep, all my scut work being done (scut work is what low-on-the-totem-pole doctor chores are called: drawing blood, collecting specimens of various body fluids, starting I.V.s, etc.). The pager went off and I peeled myself off the ceiling, cursing and grumbling as I felt the walls for the light switch, knocking the old black phone off its stand in the process. I called the nurses’ station, wondering what trivial chore they could have thought up this time. Maybe like last night: “Doctor, the patient in 37-D has Tylenol ordered for fever over 38.5. Is it all right to give it?” AAAAGHHH! Yes, please give the Tylenol as ordered. Yes ma’am.
But this call was different.
“Doctor, Nadine is asking to speak with you. Can you please come now? She’s a bit agitated.”
I threw on my white coat, bulging with tools and books, and hurried down the hall to the School Age Ward.
Nadine was a very special child. She was 11 years old, and had end-stage Cystic Fibrosis (CF). In those days, children with CF didn’t grow up to be adults with CF, like they do today. In those days, they didn’t grow up at all. The oldest known CF survivor in those days had made it to 18. But most died in early childhood of raging lung infections.
CF affects the whole body, but especially the lungs and pancreas. It’s a genetic disorder that causes the body to produce a thick, sticky mucus that gums up the airways and makes a wonderful home for bacteria. It fills up the ducts in the pancreas so that the organ cannot make digestive enzymes, and the food that’s eaten just goes right on out the other end, and the child slowly wastes away from malnutrition.
Nadine was born with CF. She got sick very soon after she was born. She required a lot of care, and soon her father couldn’t stand it and moved out. Before her first birthday, her mother couldn’t stand the stress of round-the-clock care either, so Nadine was left with an older aunt, who was a very good person but had not bargained for having a child at her stage in life, let alone an extremely high maintenance one. Nadine required special breathing treatments every four hours, followed by chest physiotherapy. That entails turning the child into all sorts of awkward positions while banging on the chest to loosen the stuck mucus and encourage the child to cough it out. Every four hours around the clock.
So even though Auntie was very good and had the disposition of an angel, she really couldn’t do it all on her own.
Nadine came down with pneumonia several times that first year, and had to be hospitalized, given antibiotics and oxygen and chest physiotherapy from the respiratory therapists, who were merciless and very effective. She would come into the hospital, stay for two or three weeks till she was over the infection, and go back to her aunt. It started feeling like a pendulum, swinging back and forth, back and forth.
In order to absorb her food, she had to take enzymes extracted from pigs’ pancreases, sprinkled on applesauce before her meals. (Pigs are biologically the most similar to humans of all animals.) She didn’t like the applesauce, and would just spit it out. Her aunt had to fight with her at every meal.
Soon poor Auntie just gave out. She had no help. There was no such thing as a home health aide that could be paid for by public assistance. So Nadine came to live in the hospital when she was three. Public assistance did pay for that, and she had everything she needed there, even school. When she was well enough, she could go outside with a volunteer. The hospital became her home, and the nurses and doctors her family.
She bonded with the nurses especially, because the nurses were more steady than the doctors, who changed wards every two or three months. But for some reason, she bonded with me, and I with her. If I had an odd moment that wasn’t spoken for elsewhere, I would go and sit with Nadine and read her a book, or sing with her. She loved to sing, even though she could only get two or three words out before she ran out of breath. But we had a good time, laughing and joking, until my beeper would go off. ”Bye, Doctor Doctor,” she would grin. That was her name for me: Doctor Doctor. It was our secret joke.
As time went by Nadine got sicker and sicker. She suffered terribly from air hunger. If you want to know what air hunger is, just hold your breath until you can’t hold it any more, and then hold it five seconds longer. That is air hunger. It’s suffocation in slow motion.
A funny thing happens in people whose lungs stop working. Normal people’s brains tell them that they need to breath based on the blood’s level of carbon dioxide (CO2). We’re not even aware of it, but the reason we take our next breath usually is because the level of CO2 rises to a threshold level, and a switch in our brain sets off the next breath. We breathe out CO2, and we breathe in oxygen (O2).
If a person has severely damaged lungs, the brain gets used to having high levels of CO2, so it uses an alternate method of knowing when to breathe: low O2. So the brain switches from “CO2 drive,” which is driven by rising levels of CO2, to “O2 drive,” which is driven by falling levels of O2.
This can lead to a dangerous situation: if a person is operating from O2 drive, then the brain triggers the next breath when the oxygen level falls below the brain’s preset threshold. That means that if you give someone who’s in O2 drive too much oxygen, they will stop breathing! But what do you do for a person who is in O2 drive, but is nevertheless starving for air because their lungs are so damaged?
Nowadays there are lung transplants. And nowadays there are much better treatments for CF, and people are living into their 50′s and even 60′s with the disease, even without a transplant. But Nadine unfortunately lived in the “bad old days,” where the best we could do was to try our best to keep ahead of the disease, and when our resources ran out, they ran out.
But here we had this precious little 11 year old girl, and she was suffering, and starving for oxygen, and we couldn’t give her any more because that would turn off her breathing center in her brain and she would die!
The unit director called a conference with the ward residents, the ward attending physician, and Nadine’s nurses (her night nurse even came in) and the respiratory therapists. We tried to get hold of Nadine’s auntie, but she had moved and the phone was disconnected.
The director asked me to summarize Nadine’s condition. It was bad. She only had about 10% of her total lung capacity to breathe with. It’s impossible to survive with that, and the fact that she was doing it was a testament to her fierce will to live. She had chronic pancreatitis, which meant that she lived in excruciating pain. She could not be given pain-killers, because that would shut down her breathing. And then there was the terrible air hunger. She begged us to please turn up her oxygen, but that would mean instant, although painless, death for her.
The director looked me straight in the eye.
“Doctor,” he said softly yet firmly, “You are the one Nadine trusts the most. If she gives you any indication that she is ready to go, you call me, day or night.” I nodded, through my tears.
That next morning at three a.m. my beeper went off, and the nurse told me that Nadine asked to see me. This time there was no grumbling: I rushed to her bedside.
The little pale face with its ever-blue lips turned up to me with an unearthly glow. I shuddered involuntarily.
“Hi, Nadine, they told me you wanted to see me.”
“Hi, Doctor Doctor,” came the wheezy little voice.
“Doctor Doctor, do you believe in angels?”
I caught my breath. ”Well, I don’t know, Nadine. Do you?”
She began to laugh, and a coughing spell racked her little body. I sat her up and helped her spit out the sticky mucus.
“Don’t you see them?” She was beaming. ”They’re standing all around us!”
That morning, I called the director and told him what she had said. An hour later, with all of us assembled at her bedside, holding her hands, we turned up her oxygen. Nadine grew pink as she breathed in the life-giving element, and went home with her angels.