Listen to the Patient

“I’m drowning! I’m drowning!” In the middle of the night, I cried out bewildered and terrified.

At the end of my first week of a severe respiratory illness and just back home from a three-night hospital stay, I found myself alone in pitch darkness and utter silence. “Where are you? I’m drowning!” I remember saying in as loud a voice as my compromised lungs could speak out into the void, a voice that was only tiny and thin. I had a sensation like I was a mess of tubes filled with mucus, like some grotesque bowl of pasta. I knew I wasn’t, of course, but I was having a horrible disconnect with reality. And I was scared.

My cries woke both of my parents, who jumped out of bed as quickly as they could in their late 70s and came into my bedroom, speaking to me in very calm and reassuring voices. I came to an understanding of where I was, but even then, I did not feel like I was really there. As my parents spoke to me, I kept asking them, “Am I here?”

“But am I here?” Again and again, I asked the question. I remember being fully conscious when I was asking — I really needed to know the answer. My mother reassured me that I was definitely there. I asked her, “Can you see me?” As though I was not convinced. I asked this question several times as well. When my parents would answer yes, I would say, “Touch my face.” There was such a strange disengagement between me and the outer sensory world that I needed some tactile connection, some real reassurance that I was real. Unable to touch my own face or even hold up my own hands to look at them because of my muscle-weakening disease, I needed their hands to make me feel physically present.

Did I think that I had died? I don’t know. Possibly. Still struggling with severe chest congestion and the inability to clear my airway, I may have experienced a real kind of drowning while sleeping, and then my eyes opened to darkness and silence. That could have been interpreted in my mind as death. It took a very long time for me to come out of whatever state of bewilderment I was in that night and talk a little more sensibly.

When I came out of it, I remembered all of it and never wanted to go back into it.

The Hospital

It’s really no wonder to me that this happened after returning home from my hospitalization. Getting little to no sleep because of all the lights they keep on in hospital corridors, the call buttons that rang incessantly (and at loudest volume because of one faulty bell) at the nearby nurses’ station, and various staff waking me when I did manage a little snooze to change the medication in my IV, check my vitals, or take my blood, I was certainly suffering from sleep deprivation. I may have also had too many steroids in my system that night because of bad math in my order to take another non-IV dose at home. Then there was the problem with adding oxygen into my BiPAP machine. I have read articles (and have experienced myself) that extra oxygen is not beneficial to people with SMA. Although our oxygen saturation may rise, our brains may relax as a result — for we always need to take extra-large breaths in order to get sufficient oxygen — causing an increase of CO2 in our bloodstream. The day after my fully awake nightmare, I continued to feel disconnected with reality, groggy and foggy. I only took extra oxygen during the day after that and did not experience the disconnect again.

My Heroes

            Throughout my four day, three night hospital stay, my parents were at my side. My sister drove my mother so that she could stay with me during the day, and my father stayed with me during the night. They would cup their hands hard against my chest to knock the mucus from my lung tissue, something called chest percussion therapy, and they would help me cough. And they would have to watch for my signs to let them know that I had a mucous plug and could not breathe so that they could lift my chin and save my life. Over and over again.

The chest percussion therapy and the assistance in coughing was supposed to be handled by the respiratory therapists, but they usually would set me up with my nebulizer treatment and then leave to go see someone else. Even after the treatment was over, when I was most in danger of having a mucous plug to arrest my breathing, they would depart from me, leaving my parents to do all the work. I’m sure they had a heavy caseload, as the hospital was full (so full that I spent my first night admitted to the hospital in the emergency department), but I also wonder if my particular case was beyond most of them. Only one excellent respiratory therapist stayed to help me cough and give me the respiratory therapy. Another one, an older man obviously looking forward to retirement, watched my father do all the heavy work and said he was tired just watching him. The man’s demeanor and other comments rather made me feel that all of this work was too much, that perhaps there was a line to be drawn for how far someone should go to help another one breathe.

I was already feeling horribly bad for my parents, even wondering myself if my continued life was worth all of my own exhausting efforts. Depending on your opinion of sacrifice, I suppose someone would either be appalled or amazed by all that my parents did to keep me alive. The majority of the staff, however, were amazed and inspired by tireless, self-giving love of Dan and Francine.

The majority of the staff members — most of them truly caring and good — were also, sadly, not well-equipped to treat someone as peculiar as me.

The Problem with Hospitalists

My ER doctor was good enough to look at my previous chest x-ray (taken when I was not sick) to compare it to the one he ordered. You see, my lungs always look like they have pneumonia because… well, they kind of do. My lower right lobe and my upper left lobe are permanently sealed shut because the tissue has been squished together too often through the years from my severe scoliosis. This has made my already small lungs even smaller, the capacity well below what it should be for someone my size. Hence my difficulty with any kind of chest congestion, especially when you add in my severely weakened respiratory muscles and absolutely puny cough. My regular doctors know this — but how can a hospitalist who has never met me before in his or her life?

Comparing x-rays, the ER doctor said that he did not think I had pneumonia. He also said that they tested me for every kind of illness they could test for and I didn’t have any of them. Nonetheless, I would be put on IV antibiotics — something I ended up not needing, but which wreaked havoc in my bowels, havoc that was only subdued after several weeks of taking probiotics that no one told me I should take.

I got a special nebulizer treatment called Mucomyst in the Emergency Department. The main reason that I had decided to call an ambulance was that I was unsuccessful in getting my prescription for this rare medication filled for home use. It didn’t bring any kind of instant relief, however. The benefit I gained was more in the trust that it would work eventually, that this was my best medical hope. The mucous plugs were so bad that I agreed to suction — a tube stuck up my nose and down my throat without any kind of anesthetic. Man, that hurt. And then the respiratory therapist would get to the part where the mucous was building up in my airway and my airflow would stop completely. I couldn’t breathe at all. One of the therapists told me that this shouldn’t happen, but thankfully turned on the vacuum, as the others did, and sucked out what was possible. Breath would be restored and at least some of the phlegm would be cleared out of my lungs. But only some.

Because I didn’t test positive for anything that they could test for, and, no doubt, because I have a motoneuron disease that none of the hospitalists specialized in and a history that none of them were familiar with, my reason for hospitalization was listed as “acute respiratory failure with hypoxia.” I got the feeling that the medical staff was under the impression that I had some new or deteriorating condition instead of simply something that I caught. I told the ER doctor and the last doctor I had (there were two in between who did not even listen to my lungs) that I had a bad chest cold, which I caught from a caregiver, and that I was simply too weak to cough it up because of my disease. I told all the nurses this as well. Plain and simple. Yet they seemed to treat me like my lungs were failing for no reason or for reasons they didn’t know. They didn’t truly listen to me and understand that I was simply battling a bad chest cold. On my last day in the hospital, the nurses and the doctor finally noticed that my oxygen level was much better when I had cleared phlegm from out of my chest. They seemed happily surprised.

On that day, I could not get out of there fast enough.

The night before, my father and I experienced a night of no sleep because my new roommate could get no sleep. I don’t know if anyone heard her say, as they placed her behind the curtain next to me, that she hadn’t slept for two days and she hoped that she could get some sleep that night. She did not. She was in her mid-nineties and rather agitated, needing to call the nurse every 20 minutes, literally calling out “Nurse! Nurse!” because she didn’t know how to use the call bell. My dad usually just pressed mine. Then the very patient night nurse would come and attend to her. It wasn’t until about two in the morning that the nurse was finally able to get the doctor to order melatonin. The dose was then upped an hour or so later. Everything moves slowly in a hospital — how is recovery supposed to move speedily?

I had just started to feel better the day before, no longer needing to use my BiPAP machine during the day — but how was I truly going to get better if it couldn’t sleep?

Although I really thought I should stay another day, after that sleepless night, I knew I had to go home. I needed sleep. My parents needed sleep. Even though I still stopped breathing multiple times a day, there was usually no one but my parents to witness it. I convinced the doctor that I should be discharged — anything to get out of there. He was a good doctor, even if he did not fully understand my disease. He said it was obvious I had good care and he was glad to see me without the BiPAP machine during the day. I was all brightness while I was speaking with him, and prayed that there would not be a new jet of mucus into my lungs when he put the stethoscope up to my chest. It worked. He released me.

Home

My sister came to help my parents get me back home. I had not looked out of a window in four days. When I came outside into sunshine and heat, I was surprised that it was summer. I had forgotten. After three days of being stuck in that ward with the obnoxiously loud nurse call bells, all I could hear when I came back home was the sound of those interminable bells — the refrigerator lummed “bong-bong, bong-bong,” the crickets chirped “bong-bong, bong-bong” — I couldn’t escape them for over 24 hours. My heart goes out to anyone in that ward who had to have a longer stay, especially the poor psychiatric patients who get housed all over the hospital and have to live there because our society provides doesn’t provide enough specialized places to actually help them.

Then came the night of terrible disconnect.

Beginning my second week of the illness at our home, the threat to my life had not changed. I went without that rare nebulizer medication because I was still having difficulty getting it for home use. I did not get better. Although very glad to have windows and quiet, my recovery stalled and I felt like I even backslid without the medication and IV fluids to keep me well hydrated. It was a very long week. But then the nebulizer treatment came through. And then my parish priest gave me the sacrament of the sick. There was no miraculous turnaround, but slowly, very, very slowly the beginning of the end inched closer, although I had no idea at the time. Those words from my reflection last week did keep sounding in my head, “Be Strong and of Good Courage.” I was spiritually a bit numb, physically and mentally exhausted, sometimes emotionally wondering if I would survive and if I should survive, and I kept needing to have my chin lifted in order to breathe again and not die.

For five weeks, I battled the mucus. And then, on August 24, the excessive mucus stopped. For the past three weeks, I have had to clear a rather thick coating in my airway, slightly blocking the passage of my air in the beginning, but blockages that I could clear on my own. I have injured my knee from sitting up too long at the computer — but that’s rather a happy pain. Thanks be to God, I am on my way to full recovery. Throughout the mucus invasion, I had the sense that I was being dismantled. Why “dismantled” I don’t really know, except that I felt like I was being taken down in order to be built up again — not exactly the same way as before, but better.

Next week (in a hopefully shorter post), explore some of this dismantling and building up with me. My late friend Donna DeGuglielmo used to call her 30+ strokes her “teachers.” I’ve never liked to think of suffering that way, but…

God is good.

All the time.

God is good.

May I not return to normal.

© 2024 Christina Chase

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Feature Photo by Marcelo Leal on Unsplash