10/4/22

I got a call this evening from Ethan’s hematologist. She said she had reviewed Ethan’s bloodwork and has started conversations with the nephrologist and the cardiologist team to change Ethan’s anticoagulation medication. Currently he is on asprin therapy.

I immediately had vomit in my throat. 

It is like an anxiety cloud swarmed around me. I felt tense.

Ugh! The last time this happened, Ethan was switched to the daily injections that were painful and required a ton of monitoring. Apparently she heard my concern in my voice. I always try to be kind and patient. The fact she detected my fear will be helpful to know, and for me to work on.

As she was talking, I pulled up Ethan’s latest cbc to see if maybe I missed a terrible number or something. His numbers, while still low, are far better than they were. She then explained it is because of Ethan’s low Protien S level. That damn Protien S. 

When you have too little protein S, it's harder for your body to control the coagulation pathway. This can result in excessive clotting. Having this deficiency puts you at risk for a blood clot. So that makes perfect sense that Ethan is at a higher risk for blood clots and may need to have additional low level anticoagulation.

As I was trying to get my “politely declined” voice ready to poo poo daily injections, she told me that due to Ethan’s age, he is eligible to try a new medication that doesn’t require monitoring AND it is a pill. Wow! Best case scenario.

I told her we weren’t doing anything until after the biopsy coming up. I only said that because we have to discontinue anticoagulation before they take a little chunk of his heart. They actually want that to form a clot.

Here’s where it gets complicated. The new medication interferes with the medication we have to give Ethan to increase his rejection medication level, because Ethan’s insurance company declined him for the extended release pill. But that was his old insurance company.

I convinced her to have the team reach out to the insurance company to see if he can have the extended release tacrolimus. If not, we have to switch him to sirolimus. I would prefer not to go switching a whole bunch of medications. Especially not knowing the side effects of the new medications…if it’s not broke, don’t fix it right?

So, we left it as we would chat more when we are in NYC. I find more gets accomplished when I have them right in front of me.

While this phone call was out of the blue….I am glad it happened. We can get through the biopsy and then focus on fine tuning the pills.

My highlight today was walking all 4 dogs in the field and no one rolled in anything dead or smelly.