Babygirl and I went for her routine kick-the-tires, check-the-oil, 3-month doctor visit. Except it wasn't quite....routine. For the first time in 8 years I had to turn north instead of south (and I swear if Google hadn't been scolding me the ENTIRE time I WOULD have gone south!), and we went for our first visit with the transplant team at University of Rochester, Strong Memorial Hospital.
We drove right past University Hospital in Syracuse, a closer alternative. We plan to never darken their doors again unless no option exits otherwise, since our last experience there was less than positive (Week Seventeen - The First Surgery.....), as you can read if you desire.
Google took us to the hospital, but not to parking. We bumbled through a private lot, let Google lead us into the ambulance bay (!!), and finally found our way to the 6th floor of the parking garage (parking here is more affordable than at CHOP, $6/visit at the worst with no need to validate. If you forget to validate at CHOP you can get hit with $24!). We had left early to allow for the bumbling, and got to our appointment with plenty of time for the endless paperwork that a first visit to a megaceenter entails. In the proscess, we discovered that her Medicaid is not valid. It's always something.
The appointment was the usual: Weight (but no height measurement - they were content to let her just tell them!), blood pressure, pulse. No urine test (which is interesting. One of her medications can cause severe birth defects. A pregnancy test was mandatory (if not necessary) at each and every visit at CHOP since she turned 13).
A nurse practitioner student took her history, and spent endless time getting her extesive medication list into the computer. A nurse practitioner confirmed it all. A social worker came in to see how she was handling the transition, and to give us resource information if we needed it. And then came....The Doctor.
It was a bit of a Soap Opera moment, actually. He's tall, dark, and almost as handsome as he thinks he is. "Why were her doctors seeing her every three months? When our patients have stable transplants for 8 years, we see them annually!"
He's clearly a man who knows his value and isn't used to getting questions from patients and their moms.
"Well, rejections are most common at age 14 and 18, so they are pretty rigid about compliance in their adolescent patients, most likely aimed at improving the odds that they WILL have a stable transplant at 8 years."
Ahem. But we had questions, most of which had nothing whatsoever to do with her kidney follow up. We know the kidney is doing fine.
"Her pediatric nephrologists were unable to clear her to use CGRP inhibitors to prevent her migraines. I was hoping you had enough experience with them to allow her to use them. Oh, and she needs a referral to neurology. We are still driving to Delaware to get her Botox done because we can't find a more local provider to do it."
It's kinda fun when you get to explain a new class of medications to a blank-faced Uber-Specialist because he has Never Heard Of Them. (Short explanation: They are injections of antibodies that scavenge the inflammatory by-products specific to migraine headaches to prevent recurrences. Similar medications are used to treat elevated cholesterol, allergies, and several other issues). Because they involve modifying the immune system (sort of?), he was concerned, and wanted to veto. I refused to let him unless he did some research first. He agreed.
He put in a neurology referral and instructed us to call if they refused to take her so he could speak to them (they have already refused a referral from our primary care doctor).
He did a thorough exam, told us he wanted her to do monthly blood work at home, and then announced that he would see us in a year, but that the nurse practitioner would be back in to send in our prescriptions because "she's better at that than I am." So kind of you to notice.
When she returned, she asked about follow up and was appalled to here the 1-year plan. "On a patient just transferring from pediatrics? We need to get to know you first! We usually do every 3 months for a while. Babygirl was clearly relieved by this. We scheduled follow up for June, but can adjust based on neurology, if/when we get that apppointment.
We stopped at an outlet mall on the way home, walked 2 miles and did some shopping. We discussed politics, tax distribution, the importance of elections that DON'T involve only presidents, health care, and listened to both current music and Pandora's Chicago channel.
When we pulled up in front of the house, I looked at her and said, "I just drove 7 hours. You'd think we'd have gotten farther away!"
DeeDee
