2/3/26

 Ethan and I went to the cardiology office. He went in to have his echo done and I waited in the waiting room. I chose a chair off to the side away from everyone. Apparently I had an invisible sign above my head that said “Please sit as close to me as possible”. All the chairs within a few minutes were full around me. 

I was planning my exit to the other, vacant side of the room. The guy next to me coughed and then told his wife his stomach hurt. He then started burping. His wife was sniffling like she had to blow her nose. It was like nails on a chalkboard. I never used to be like this pre transplant.

I gathered up my things and as non-rudely as I could to get the hell out of the germ cloud that had been brought my way. I can’t have Ethan breathing that sick and burpy air.

Ethan came out and shared that they gave him image enhancer for his echo. It is a solution that causes micro bubbles and allows them to see his heart a little clearer.as they gave him the solution, a collection of bubbles collected and were injected. They asked Ethan if it hurt. It didn’t hurt him. They told him that rarely happens. This kid is a “rare” magnet!

We were then called back to meet with the cardiologist. The lady took his blood pressure. One of Ethan’s medications can elevate his blood pressure. We periodically check it at home. 

Today when the lady took his blood pressure it was 155/83. Woah! That is not a good reading for him. Before I could say anything to have them re-do it, Ethan spoke up.

“That is not accurate. I just had my blood pressure taken with my echo and it was in the 120’s.”

He spoke up! He knew it was wrong. The lady re-did the blood pressure without his sweatshirt on and his reading came out much better. That reading, if consistent would have prompted a medication dosage change for sure!

His cardiologist came in and started going over Ethan’s medications, goes over recommendations for frequency of doctor’s visits, checks to see when we last had gone to the eye doctor, dermatologist, neurologist, kidney doctor etc….

Since this is an annual check up we did have to share Ethan’s urgent care visits around Halloween. Luckily I was smart enough to have sent all the paperwork over and it was included in his chart. Good for me!

During the echo, Ethan also had a myocardial Strain Test.

This is an ultrasound technique that is 2D. If you look at the results you have to picture the heart like a flat donut or bullseye with the imaging beam hitting the bottom of the heart first and flattening it.  It looks at how the heart contracts, relaxes and even looks at perfusion (how much blow flow is to an area. Damaged tissue looks a little more blue where as healthy tissue looks red.

Here is a sample picture (NOT ETHAN’s). The blue lines over it are trying to show where the heart is vs. the flat picture.

The doctor went back to 2024 and found that Ethan’s Strain test was slightly abnormal. His was mostly red with a small area of pink in it. He wasn’t too concerned with it. In 2025 there was a minimal change in the area of pink vs. area of red. It was mentioned, but it was not concerning.

This year the pink area was a little larger and now there was a small area of blue. Ok. Ethan has now earned himself a cardiac MRI. His cardiologist said that the MRI will help take a picture of the area in question and offer more information. He said it likely won’t change anything they were doing.

We discussed the contrast for the MRI and how Ethan’s kidney clearance was not great. His GFR needs to be at least 30. Last month his dipped to 35 the lowest it had ever been with the transplanted kidney. For perspective, a healthy person his age has a reading of over 90. A reading of 15 is end stage renal failure and requires dialysis.

Because Ethan figured out his new medication had caused the hit to his kidneys he has changed his medication and has now recovered to a GFR of 43. Phew!

His MRI was scheduled in May. They said he had time to schedule and it was not urgent. That is comforting.

Overall the cardiologist was pleased with how well Ethan’s heart is doing. He was also pleased Ethan decided to take part in the blood test tracking duel transplant patients and if they were in rejection. He wants Ethan to do that research test again in July.

Ethan was not amused his cardiologist ridiculed him for not doing any routine exercise. He mentioned on the way home he was a little miffed because he struggles to get through a normal work day with his fatigue. How is he supposed to do 30 minutes of daily exercise on top of it? 

I told him to do the best he can, that is all we ask. Some days are going to be easier and other days he can skip it. He just wants to be normal and work full time. Perspective.

Ethan is also set up for his nuclear stress test in July. If it’s normal, we will continue business as usual. If it is abnormal, he will graduate to angiogram. That might be tricky with Ethan’s kidney values.

As we exited the appointment, we were dumped into the waiting room to check out. The entire room was filled with people much older than myself. There were multiple wheel chairs and even someone on oxygen. 

I thought about what their lives were like before they developed heart disease. It did make me feel a little sad that Ethan had such a short time living normal-ishly prior to his transplant. But he survived. I am thankful

for that. I am also thankful on how much I have learned along the way.

We drove home is a partial blizzard. Luckily it wasn’t the entire way home. The picture below is a street full of houses and trees. This was all I could see.

Each appointment we will take one step at a time. Ethan will never have to navigate it alone. He will have be able to make his own medical choices and we will support what he chooses. He is getting so good at advocating for himself. I am proud of him. Tomorrow he turns 23. That is so weird because I am only 25. Let’s not do the math.