4/27/22

The ride across the bridge, the 3 miles we drive (the Uber drives) is bumper to bumper and moves at a snails pace. I have often considered walking it as I think we would get over the bridge faster. However, not that much faster and since I am a little bit lazy, we will go by car.

Ethan was in good spirits this morning which is good. Since he has been feeling more tired lately, he has voiced concern that he is worried about his kidney function. The bloodwork won’t lie.

We went to nephrology and they were please with how Ethan is doing. We mentioned him being a little bit more tired over the past few weeks and they said that the blood work would be helpful.

We went to cardiology next. Ethan got his EKG. It’s funny because his blood pressure in nephrology was 102/60. By the time he got to cardiology it was 119/79. They take his weight, height and blood pressure at each appointment because apparently the systems don’t talk and relay that info. That’s annoying.

We waited about a half hour, panicking that the terrible echo lady was going to do the echo. This woman is slow, she in NOT empathetic and it is painful for Ethan. She often has to go back and repeat shots. If he mentions that she is pressing too hard, she basically says “that’s too bad” and doesn’t alter a thing she is doing. Ethan HATES her. 

A lady walked in and it was his favorite Echo lady. This was wonderful for him. I left him during the echo and went over for blood work.

The waiting room was full to the brim. The blood drawers would walk in the room and some of the people, when their name was called, said “here”. Then the lab work person had to say “come with me please”. Why make the lab people go through this extra step?

I was able to get my blood drawn, and make it back for the end of Ethan’s echo. Ethan was watching the screen. He said “it’s weird, I am watching Colie’s heart beating right now.” It drives home what a precious gift we have. Someone else’s daughter’s heart. I grieve for them daily. I am so thankful for transplant.

We met with Ethan’s cardiologist to discuss the echo results and have an exam. Everything looks great on the echo. We love her. She is cautious, she is thorough. We developed a plan for biopsy in July and October. We developed a plan for  weaning off one of his pulmonary hypertension medications safely. 

The Uber in Savannah was way different than the Uber in NYC. The drivers in Savannah were unmasked. The drivers in NYC were still masked and still had the plexiglass barriers up.

Ethan fell asleep on the ride home. I was like a new mom. I didn’t stop for anything because I didn’t want to wake him up.

On the drive home, we got the call that Ethan’s results were back. His tacro level (rejection med) is high. Not the highest it has ever been but pretty high. His creatinine is also high. His White blood cells have dropped.

What does this mean? We need to adjust some doses of his tacro. We need to discontinue the likely culprit of the low WBC’s which is his antiviral medication. His creatinine is high. Like kinda not good high. But then Ethan piped up that his tacro was elevated and he remembered the doctor saying a few months ago that when your tacro is high, your creatinine goes up. So we will see where things stand on his bloodwork in about 2 weeks. Also, a high tacro can cause lethargy. So hopefully things can get squared away with all the little tweaks.

My blood work came back that all systems are working well. It’s a little early and bloodwork looks great! I am pleased. I pretty much did everything they told me to. Yeah for me!

I would rate this as one of our best trips regarding Ethan’s mood. That is my bright side.