I wrote to Ethan’s cardiologist in NYC today to try and initiate the transfer to the adult transplant team in Rochester. Nephrology has signed off, but before we can do anything, we need cardiology to sign off as well.
From what I am told, we will meet with cardiology first in Rochester, then nephrology. Cardiology usually calls the shots, nephrology just makes sure that it doesn’t hurt the kidneys. That is my cliff’s notes version. I am sure it is more involved than that.
It is scary to think that we will be transferring. We have had such wonderful treatment. Rochester will have big shoes to fill. It is hard to initiate trust with doctors. But I am hoping we can work together as a team to keep this kid going for many, many years.
Ethan and I have discussed that he wants my help with appointments. He has grown a lot and has memorized the generic name and brand name of his medications, knows what condition they treat, frequency and strength of the medication etc. He has shown that he is thinking about his health conditions when visiting doctors outside of his transplant teams.
We will see how it goes.
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