7/24/24

 Results came back from the kidney biopsy. On a cellular level, there was no change. Ethan still has the autoimmune disorder but it has stayed the same. His kidney values have elevated but the doctor is now saying she wants to see what happens in the next 3 months and how things trend.

This is good news, but it was also frustrating news, especially for Ethan. We asked about his fatigue and were told that since it is such a vague symptom, there really wasn’t much they could do about that.

Ethan felt like he was walking away from the meeting with the message “you’re just going to have to be fatigued forever.”

He was frustrated that he feels like the doctors are letting this kidney decline and aren’t being proactively trying to slow the progression. We see the numbers climbing slowly but we have to wait for “trends”.

We will play the game. Repeat labs in September, see where things stand then. In the mean time, Ethan is not happy. He was hoping to get out on a medication that would help. They don’t want to start that due to his biopsy results. This team has not figured out that Ethan doesn’t play by the rules. So this naturally concerns me.

I was thankful that we could do a tele-health call. I drove to Ethan’s work and we met with the doctors via zoom. Next week we have an echocardiogram and nuclear studies to assess his heart!

Paul finally came home. Yay! I showed him all the things that broke while he was gone, so he could fix them. He had his own agenda and time line, which was fine by me. These things have been broken for like 10 days…what’s a few more days?

Ethan drove by a horrible car accident yesterday. He saw a tarp up and knew that was not a good sign. An 18 year old girl passed away in the accident. My heart goes out to that family. So awful! How would you even begin to cope?

All these accidents and just things I have seen over the past 4 years, for some reason has influenced my driving. While I still engage in name calling, and somehow I am always the best driver on the road at all times, I find that I am not taking as many stupid risks AND I don’t care as much if I am a couple minutes late. I arrived safely. That is the important piece of the puzzle. 

If anything good could come out of a fatal car accident, it should be awareness. If you are aware of you surrounding, you can control the car to the best of your ability.

Gotta get up early tomorrow. I am pulling the plug on this day.