Ethan and I made our way this morning to the hospital for Ethan’s twice a week labwork and appointment. Ethan has a goal to have his rejection medication to be measured between 8-10. He has been boomeranging his levels as his dose is closely titrated. It was last measured on Friday at 14. His dose of medication was lowered. Today he measured high again. His level was 19. Yikes! His dose was cut in half. This is the tricky part of after transplant. Regulating the medications.
Ethan and I both felt tired today. We did stay up late to watch a show on metal fabrication and welding. He took a nap. I proceeded to try and figure out how we are going to pull off this intensive post transplant schedule. I also contacted our coordinator regarding several letters and forms I need filled out for college, insurance, and SSI. I also had several emails to respond to, that were more difficult to look at when sitting in a chair was a little more painful.
My gut seems to be getting better each day. I dropped my “to go” cup off. That was super fun, walking around with my own feces in a cup and pretending it was a sandwich from the cafe. (I used a cafe bag to conceal it). Paul is voting that I have worms. He thinks he is funny. (Spoiler alert: I am not dragging my butt on the carpet…..so pretty sure it’s not worms.)
Ethan posted another YouTube video:
If you have a minute, check it out.
I just finished watching Ethan's latest video and I am smiling ear to ear while crying tears of joy. Thank you Ethan for sharing your thoughts about your intense, crazy experience. You DID it! You MADE it! You CONQUERED! No more organ failure. What a powerful story and you ARE already inspiring so many people. No doubt about it. Cheers to your new chapter beginning! Let's all go live the "hell" out of this life. 2022 is looking so bright for you and your family. All of our love and support! xoxo
ReplyDelete