What do you do when when you need immediate attention for a health issue in a specialized area, but the medical services system won’t accommodate you because you’re not sick enough to qualify for emergency relief? The other day I found out what might happen and how you might be treated in a situation like this. I came out all right in the end, but I think of others who may well feel helpless, paralyzed and trapped in the face of what I discovered.
The other night, I was up late trying to cope with the chemo-induced neuropathy in my feet and legs. As I made my way through the kitchen, the tubing on a drain that’s inserted into my body caught on a cabinet knob and flew apart. This was serious. I’ve had this drain in my body — five of them in succession — for an entire year. When the draining is interrupted, infectious material builds up in an abscess in my lower back. The last time this happened, I developed sepsis and was in critical condition for a day and a half.
So I called the 24-hour emergency number at the cancer center and spoke with an oncologist who promised to contact the hospital in Bangor to let them know of my situation. I waited until morning dawned and called the cancer center back shortly after it opened for the day. A nurse-practitioner assured me that they’d contacted the hospital on my behalf and that I should be receiving a call from them soon. Two hours passed and I’d heard nothing. I called my oncologist’s nurse who told me that she was sure the hospital has heard of my situation, but has no idea why they hadn’t responded. I wondered aloud about simply making the hour-long trip to the hospital so that at least I will be there ready to be worked on when the hospital system catches up with my oncologist’s order. She thought that was a good idea.
I arrived at the hospital, registered at the Interventional Radiation Department only to have the receptionist tell me that no call had reached them with any doctor’s orders for me to be seen. Then, the receptionist at the next desk who overheard our conversation volunteered that she recalled that something came through with my name attached to it earlier in the day, but it got passed on to a different office. She offered to take me to the Imaging Department located on the other side of the hospital; she promised that they’d see me there. At Imaging, I waited in line for several minutes and finally got the chance to explain my situation to the nurse at the desk. She checked the outpatient schedule for the day and informed me that I wasn’t on that list. I explained once more that because my situation just developed overnight, my name’s not likely to be on that list. I emphasized that the oncologist from the cancer center had contacted their department on my behalf and that they should have some record of his referral that was made earlier in the day.
The nurse looked at me and said, “You know, you can’t just come in here off the street and expect treatment. I’m going to have to refer this to the Charge Nurse. You’ll have to take a seat over there and wait.” Fifteen minutes later another nurse arrived, a stout middle aged woman who looked very much like someone who’s used to being in charge. She called me over, skepticism and impatience written on her face, annoyance easily read in her body language. I told my story to her all over again.
She hesitated for a moment and then said, ”I’m going to see if the doctors have received anything about you. But even if they have,” she added, “unless they consider yours to be an ‘emergent’ situation, we’re so busy, we probably won’t be able to do anything today or even tomorrow about your problem. Please take a seat in the waiting room and try to be patient.”
A half hour later, the charge nurse returned, called me to the reception desk and reported, “Well, yes, the doctors have heard something about you from the cancer center. They checked your past imaging records and have determined that you’re not draining sufficient quantities of infectious material to deem your situation to be serious enough to interrupt their schedule in order to see you today. You’ll be getting a call from the Registration Department later in the day; they’ll schedule you to be seen at the end of the week.”
I calmly but pointedly replied, “The most recent images the radiologists have to evaluate my case were taken three weeks ago when the now-disconnected drain was working properly. Currently, the drain is no longer connected to my body. The last time my drain malfunctioned in that way, in a matter of hours I almost died from sepsis. She replied, “Well if you begin to feel bad, are running a fever or have pain in the abscess area, and it turns out you are becoming reinfected, you can start this process over by seeking admission through the emergency room.”
I took a deep breath and said “My mission today is to do whatever I can to avoid getting back into such a critical situation. You’ve made it clear that, absent symptoms of significant infection, I’ll have to wait three days before I can be seen to have the drain repositioned or replaced. I understand that. But before I leave the hospital today, I would at least like to see someone from interventional radiology who could repair the tubing hardware so I could begin draining again and avoid the possibility of a massive reinfection.” The Charge Nurse stared at me in silence for a long moment. I stared back as benevolently and persistently as I could. Finally she said, “Wait over there, and try to be patient.”
About fifteen minutes later, a radiation technician emerged from the entrance to the examining room area and called my name. I recognized him immediately and he remembered me from the time he assisted in the insertion of my drain number four, seven months ago. I recalled that he was an experienced hand — Ronald had been working in that department for sixteen years. We greeted each other like long-lost friends and I quickly told him of my situation and of the temporary repair I was hoping for. In almost conspiratorial fashion, he ushered me into an examining room, assessed the situation and said, “They told me you had a drain that wasn’t functioning properly. This thing isn’t even connected. But you’re not going home until we get you hooked back up and draining again.”
Twenty-five minutes later, I had a reconnected, fully functioning drain to go home with. I told Ronald I thought he was a genius and he replied, “I love a challenge like this and I’m grateful it’s something I could do for you.” After thanking him again, I went out through the waiting room and walked up to the reception desk. The nurse on duty and the charge nurse stared at me suspiciously. I said, “I just want to thank both of you for the efforts you’ve made on my behalf today. I know it’s been a busy day for you, and I appreciate your care. Ronald fixed the drain situation, temporarily, at least, and I’m grateful.” They both smiled and wished me well until my return at the end of the week.
I’ve always known how important it is to advocate for the highest level of care when dealing with complicated and congested medical systems. But it takes energy and discipline and an abiding sense of the rightness of your cause. It’s not always possible to dredge up those skills when you’re feeling lousy, anxious and uncertain about yourself to begin with. Lots of people, I suspect, face such situations every day in hospitals and other medical settings. I see them so often looking deflated, demeaned and defeated as they struggle with their physical deficits. It’s hard to avoid falling into a kind of self-loathing on account of your infirmities. People need to be loved, cared for and listened to more than ever when they’re sick. Procedures are important and protocols are necessary, but people need always to come first.