I remember the first time I met you. As I sit here this Sunday morning waiting for my coffee I'm back at that moment, Mrs. Langley. I remember walking into your room in the intensive care unit (ICU). You lying propped up on your bed, mouth slightly open, with both eyes half-open staring at the television. Your neatly dressed husband is by your side looking worried. It really was your eyes that really caught me. They were pale, sickly, and gray. It seemed like everything that made you human had already left you. All you can offer was a weak nod. "I'll be back tomorrow," I said as I left the room.
Back then, you were 67 and had battled lung disease for a long time. The lung transplant 3 months ago was supposed to bring a new, happier chapter. You thought your struggles were over. Reality was not so kind. The transplanted lungs worked well, but you weren’t recovering. You needed a breathing tube several more times. You were too weak to work with the physical therapists. You couldn’t even talk well and could only mouth words.
As part of your the psychiatry team, we diagnosed you as being depressed and starting adjusting your depression medication amounts. We also spoke with the various specialist teams on how they thought you were doing medically. All of the responses were positive and encouraging. That first week, we went to see you everyday, tweaking doses of medications each time. None of it helped though. At the end of the week, you suffered another setback and needed the breathing tube put into your mouth and lungs again. Frustrated, we realize we hadn't gotten in touch with the other partner in your care: you.
I started spending an hour a day with you just getting to know you as a person. It was tough at first. You couldn’t mouth the words with the tube in your mouth so you had to write. Your hands were shaky, so we got you a weighted marker. Most of what you wrote was hard to understand, but through some guessing and rewriting, we were able to communicate.
I learned that you grew up in a large ranch house in Virginia Beach that was built by your father. You only agreed to move into the house because your father had promised you your own room. You deeply appreciated your husband for visiting you almost everyday, and that he always dressed so well because you picked his clothes for him. We spoke with him when he came to visit to get his perspective. You liked to cook large meals at home and to interior decorate. In your spare time, you were a writer, which is why you preferred writing to communicate.
These daily visits made it so we no longer had to adjust your medications. Instead, we came when the physical therapists came to work with you and cheered you on. You slowly regained your strength and became more alert with each passing day. During my final days in the hospital, your breathing had improved dramatically. Your tremor was gone and you were writing a mile a minute. Before I left, we promised to get coffee together when you left out of the hospital.
What do you feel helped you the most during that time? Did you find a meaningful difference between 5mg or 10mg of your depression medications? When your blood work and x-rays all showed good results, what was it that kept you in bed? On your 121st day in the hospital, what did you need from your medical team? I think you wanted to be heard. You wanted not to be forgotten. You wanted not to be defined by a number in our computers. You wanted to get out of that bed and back into your life but we focused all of our attention on the “numbers”. Each day was a day you were missing out on life.
I’m glad we were able to recognize the importance of you and your family in your medical care. We brought you onto the team. Oftentimes as doctors, we get lost in the notes, blood work, and specialist recommendations and forget to ask the simple question. "How can I help you?” As I sit here, waiting for you to arrive for our Sunday morning coffee, I want to thank you, Mrs. Langley, for allowing me to be a part of your life. I hope more patients will open up to us about themselves to not only advocate for their own health, but to keep us grounded and focused on the humanity of our patients. For me, this coffee signifies more than you getting better. It signifies a promise that I will never forget to include you, the patient, on our medical team.
Dr. Fu is an assistant professor of anesthesiology and critical care medicine at the University of Maryland School of Medicine. He completed his training at Yale and Johns Hopkins University. Find more information on him and connect with him at https://www.linkedin.com/in/song-fu-ab3b0449/ .