Week Twelve - Meeting the Transplant Team.....

Our appointment with the transpant team started at 7:30 AM and ended at 2:30 PM.  There was no break for lunch.  We were told it would end at noon, and knowing my daughter's eating habits and fluid needs I brought drinks and snacks, thank God.

First, a nurse for the inevitable weight/height/blood pressure and pee speciment.  She herself had had a kidney transplant, with a successful pregnancy afterwards!  She showed my daughter her scars, which was VERY cool.

Then we saw a movie on transplantation with another transplant candidate (30ish).  Then the transplant coordinator (RN) came in.  She explained her role in the process and then gave a slide show/informed consent discussion.  Of course, any discussion that includes the possible death and dismemberment of your child is an appalling wake-up call, even if you know it's coming.  They made no effort to soften it for my daughter, or to exclude her from the discussion.  It's not that I don't think she has the right to know, exactly.  It's more that I think I should have been given the option to exclude her from some of the scarier stuff if I felt it inappropriate.  I wonder at what age, if any, they offer parents that option? She also told us that no one would be added to the transplant list until the transplant meeting, nearly a month from now.

Next was the surgeon.  I was surprised that it was a woman (yeah, yeah, I know, I'm a woman and I'm a doc).  But female urologists are a distinct minority in their profession.  Her initial discussion was so obviously aimed at my daughter (assuming she thought my daughter was, say, 6) that I almost wanted to tell her to talk like a grownup.  But in the end I adjusted to her approach.  The content was clear, her discussion of the proceedure understandable,  She was FAR more honest than our nephrologist about the odds of getting a kidney, the wait time, and the number of pediatric transplants she has done and does each year. I like her.  I could trust her.

Then the resident.  It's July, so this guy has been a doctor for 2 whole weeks.  He's clearly clueless and is still using checklists to figure out what to ask.  But I know that one way or the other we have a wait - there's another candidate in the room next door, so we gamely take it. He needs to learn, and I don't mind teaching.  I didn't tell him until he was done that I was also a doc.  Then he got really nervous LOL.

Then the dietician.  We already have a pretty good clue on this stuff so she didn't really cover much that we didn't know.  She was also one of those sort of Zen granolaheads who instructed me on "mindfullness".  Frankly, right now my mind IS full, and being out of my mind seems like a very good choice at times.  I didn't say anything.

Then the social worker.  She screened BabyGirl for depression, assessed how she was handling things.  Frankly, she should have screened ME.  My doc has already increased the antidepressant we started a few weeks ago, and I'm in counseling, thank you.  So now I only cry a few times a day and not all the time.

Then the resident, with the surgeon.  She made sure we understood everything we had thus far heard, looked over the labs, examined my baby and said, "Forget the transplant meeting - I'm calling everybody for an okay and getting her listed now."  That was very reassuring, except that we had already been told that the average wait is 3 - 5 years. I discussed our desire to multi-list, and told her where I wanted to go, and our nephrologist's puzzling reaction.  She herself trained at that center, and felt it was an excellent alternative, but emphasized how much time we'd be spending on the road if the local guy wouldn't do follow-up.

Then the living donor coordinator.  She asked if we had any potential living donors (we do).  She handed me several of her cards, with her number.  I am to give our potential living donors her number, explain that they need to contact her, and then tell them I am not permitted to discuss donation or my daughter's kidney issues with them again after that (they want to be sure I am not hectoring people into coughing up a kidney).  She also gave me the best news I've had in weeks.  There is a fund that pays for living donor screening!  So that $10K/person?  Not our problem anymore!

So now you are up to date.  Twelve weeks.  Just under 1/4 of a year.  Can I get off this ride now?   I don't like it.

DeeDee