#502

One day we'll talk about transplantation. In fact, I thought today might be the day as I've spent hours composing what I would write in my head. It's not that I disagree with transplantation in general. In fact, I believe it is a truly remarkable intervention. It's just that it is such a fraught intervention, and so poorly managed in children. Adults choosing to accept a better life is one thing, but being relegated to a life of medications, hospitalizations, and complications by someone else's choice is an entirely different thing. I thought I would write whole paragraphs about how I stayed 2 hours late tonight to talk to two of my teenage transplant recipients, about how puzzling it is that we as a society agree to transplant a heart into a child who is an illegal immigrant but fail to secure housing and turn a blind eye while she lives in a shelter, or agree to give a heart to a child but fail to help her cope with the day to day difficulties of accepting a chronic medical condition such that she runs away from home for 2 weeks. I know, the core principle of solid organ transplantion is that the donation is a "gift," and as such, neither the donor's family nor the medical team has a right to badger the recipient into living better in order to pay homage to the extraordinary gift that they received. But I can't help every day but think, as I look at this patient with a transplanted small bowel, and that patient with their new liver, and this child with, yes, their new heart, that someone else's child, someone else's deep, tormented, and dark pain is living within my patient's body. (And yes, it should be said their light and promise dwell within, too.) It is not to say that it is my patient's fault that they are coping so poorly with the experience of being a transplant patient that they have chosen to run away from home. It is to say that we as a medical community have failed them, and failed the donor's family, too, that they have become the psychological mess that they are.

How can you prescribe 25 medications to a child who lives in a shelter and fail to understand when her mother doesn't show up because if she misses one more day of work she will be fired, meaning that the tiny income she makes and the slim opportunity for real and stable housing she has will vanish again? I come from a background that says never prescribe a treatment your patient cannot realistic adhere to because to do otherwise would be to do more harm than good. I was taught to always ask the "why?" Not in "why does this patient have this symptom?" but as in "why is this patient sick now?"

Maybe I will write about the nurse practitioner who made fun of me for even trying to reach these kids. "Honey," she said, "I've been working with this kid for years. You're not going to fix her, but you can try all you want. Be my guest." But there are times when taking a strength-based approach might just work. Forget about telling this patient "go to school, take your meds...or else." What about saying, "I want you go to school, not because you should, but because I think you can"?

Tom is skeptical over there in his chair. But I'll keep trying.

I sat next to a woman on the train today, her daughter was about 3 years old. Mom spent several minutes reminding her daughter to watch her feet and not accidentally kick the passengers around her. And then she kissed her. And then she told her how much she loved her. And then she said, "Tonight we go to bed early because you were up to late last night." And I was so inspired to see a competent mom for once after completing 4% of my residency training that I took a chance and I said to this mother as she was exiting the train, "I am sorry to be nosy, but I'm a pediatrician and I wanted to say that you are a great mom."

"Thanks," she said. And then over her shoulder: "it means a lot in light of the custody battle I'm having with my ex."