I reached out to Ethan’s Heart Transplant team today to find out how his prospera test went. This is the research study test that is supposed to help identify people that may have rejection through a blood test.
The purpose of the test is to try and eliminate biopsies whenever possible. Ethan’s last test was elevated. Normal is .18 or below. Ethan’s readings have been .42 and .34. His heart team has advised doing a biopsy to check for rejection.
I asked if there was a chance that these elevated values do not mean rejection. Her answer was simple “it is rare for someone to have these kind of numbers and is not having any issues, but I have seen it happen.”
Biopsy is the best way to see rejection at a cellular level and with Ethan’s Kidney values low, I do feel he needs to have this done on his kidney as well. He does both of these tests without anesthesia. He is a bad ass!
I reached out to the kidney team asking when our next appointment is (it hadn’t been scheduled) and if we should just schedule the biopsy.
The scheduler lady reached out to let me know his doctor was on vacation until Monday. The scheduler referred to Ethan’s doctor several times as a male but it is a female leading me to believe she didn’t even know his doctor.
She told me that she scheduled his clinic appointment on November 4 th and that at that point the doctor would determine if he needed a biopsy. Ummmm……what?Suspected rejection is just not something you want to delay.
I mentioned my concern for rejection and that this is a time sensitive issue. The scheduler lady and she said the doctor doesn’t have any times sooner because she saves those appointments for “important things”.
Apparently rejection is not important?
In a split second I became enraged! I needed to make a split second decision. I briefly thought about barking back at her. What would that solve? She needs feedback in a thoughtful way to improve. I can deliver this message to the doctor when I have had time to calm down.
This is a lack of knowledge issue for this lady. This woman likely does not understand what a kidney biopsy is, why it is done, what rejection means or any of it.
We all cross paths with a person like this. She is in control of the schedule. I don’t want to rock that boat. Things like that get recorded in medical records.
But she royally pissed me off. I stewed about it. “Important things”……
Unfortunately, I have a very strong protective Mom thing going on when it comes to Ethan’s medical care. “Important things”??????? That is my kid and his delicate transplanted organs.
I am here to remind everyone to advocate heavily for yourself. I am not going to let the need for a kidney biopsy for rejection just sit around for 2 months.
My split second decision was to thank her for the appointment and hang up. My internal dialogue was not fit to be shared yet.
I will reconnect on Monday once the doctor is back and get things situated. Until then I will stew about the phone call and lack of training this scheduler has.
I was able to schedule excursions for our cruise with our cruise group this evening.
I was invited to go to wing night at the local restaurant with some shoreline friends. That was fun and I enjoyed it.
“Important things….” Unbelievable!
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