When I see kids for their first clinic visit after kidney transplant, I ask them all:

What did you wish I warned you about that I didn’t?
Was anything a surprise?

Here are some things I’ve learned that have helped with pre-transplant counseling...

Kids hate the Foley catheter, but they don’t know what that is when the surgeon tells them it will be in for 4-5 days. Use simple explanations. “You will have a rubber tube in your urethra that will drain your urine. It will be uncomfortable”

“You didn’t tell me I was going to be on 10 medicines.” True. I always warned about the immunosuppressives and anti infectives, but often didn’t mention the frequent mg or phos supplements. Adds to pull burden. Now I warn them.

“You didn’t tell me I’d have to get up and move around so fast.” Our physical therapists are ruthless. Now I talk about the recovery process and how we help them exercise to help them recover faster.

Parents: “You didn’t tell me it would take so long for me to recover after donating.” OK, this one’s on the donor team. But now, I make sure they have help lined up for when they go home.

What are your pre-kidney transplant counseling pearls?