9/4/24

I woke up with a headache. It’s appointment day. I slept terrible and my back hurts. This is the point where…if Avery were talking I would ask her to point out something positive. My positive was that I had the day off.

Of course Ethan’s “cold” has thrown my brain into overdrive. I spent the night planning for “what if’s”. My plans have plans. I make plans to control something I have no control over. I made a work plan, a dog plan, a house plan, a food plan all “just in case” Ethan has to be admitted. 

I would insist on staying in the hospital with him. I understand that isn’t allowed…gotta make a plan for that.

I came down stairs and asked Ethan how he was feeling. He said he was feeling ok, but his throat was sore. Ugh! I took his temperature with two different thermometers and had him check it too for a third time. All were normal. Yay! Triple sure. 

He was eating normally and chatting up a storm so I believed him that he felt ok.

He went to work and I kept myself occupied trying to straighten up the house. As the day went on, my back hurt worse.

We went to the hospital and went to the heart center. Ground floor, silver elevators. We met with our cardiologist’s nurse practitioner. I have communicated with her multiple times over MyChart but this was our first time meeting.

She started the appointment off outlining the tests and how we got to where we are. How the nuclear studies were giving results suggesting an issue with blood flow or rejection. The echo showed enlargement of the left atrium going from mild last year to severe this year. There was also a spot that showed the heart wasn’t moving the way it should which suggested either rejection or an issue with the vessels in that area. This was more concerning to her than the enlargement of the atrium. The ECG was abnormal.

Then we had the left and right side catheterization with a biopsy, which is considered the gold standard, to assess all of these issues to get a definitive answer.

Ethan still has a borderline high pulmonary blood pressure. At this point they are not going to treat it. 

Ethan’s angiogram came back that all his vessels imaged normally. Yay! There were no barriers. No further treatment needed at this time. 

I did ask about the change in the left atrium from mild to severe. This is considered a normal finding for transplant patients. They ignore it. One out of two heart transplant recipients has this issue and it is explained by how the vessels were attached during the surgery. There may be a little scar tissue that bumps up the pressure a little bit and causes this increase in size. I asked about a stent and he does not need one. Yay.

The decreased movement in the heart was the concerning factor for rejection. They often see this behavior with rejection. Ethan’s biopsy came back negative for cellular AND antibody mediated rejection. So my next question….why is there decreased movement in that area?

I got the typical, “Ethan is an anomaly. We have never seen the echo imaging with decreased movement in one spot AND  abnormal ECG AND measurements that offer suspect vascularopathy (which means an abnormality with the blood vessels in the heart) and then have  a normal heart catheterization and biopsy.”

She turned to Ethan and said “your mom warned me about you.”

But this is FANTASTIC news! Yay!!!! Ethan stepped in shit and came out smelling like a rose. Phew! I would like to be done with “concerns” for a while.

It is a constant state of elevated cortisol! Cortisol controls so many things in a bad way, in your body. Enough is enough!

Then, she asked me about Ethan’s kidney function and if I could explain what was going on to her.

I explained that I was frustrated with the kidney team as Ethan’s values continue to decline. I explained that his GFR keeps going down (it is around 50, but should be over 90). Ethan’s creatinine is going up (which causes the GFR to go down). The kidney team keeps telling me that they are watching Ethan’s “trends” and they need to continue watching.

I shared that it was frustrating to see his kidney decline and nothing is being done about it. I told her I consulted with Ethan’s previous nephrologist that suggested a medication to help and when I brought that up, the nephrologist responded with “Let’s see the trend in one month.” Just a one sentence response.

I shared that I felt like I wasn’t being heard and that it just seemed that it was acceptable to let his kidney continue to decline. There was no entertaining or solving the problem…just watching it get worse.

The Nurse practitioner politely listened. She then said that she had reached out to the kidney team yesterday to see if they would approve the use of a medication that has beneficial effects on the heart and kidneys.

This drug is something that can potentially help with the protein in Ethan’s urine as well as ease the load of the kidney to hopefully improve his function.

This drug, is the SAME drug I inquired about on 8/27 and was told that we were only going to watch his kidney levels and NOT use do anything about it. 8 days ago. I bring it up 8 days ago and was shut down. Now suddenly it is a good idea or even an idea worth considering?

I thanked the nurse practitioner for actually coming up with a solution to help support Ethan’s kidney. It shows that she cares, she did her homework ahead of time and she is on the ball.

It also shows that the kidney team doesn’t value input. I have worked with animal doctors like this. They want to be right and have all the answers. They may purposely say no to something because it was not their idea. I do not have time for this ego non-sense.

Now that I am not trusting, I am considering switching nephrologists. Unfortunately it means more appointments, more phone calls and starting over. I am angry about it. I have decided to sit on the anger and let it subside before doing anything. I need to mull over my feelings as well as Ethan’s feelings. He is pissed and feels like he doesn’t matter to them.

On a positive note, we got the best news that we could have gotten today. We also are going to start a medication that will hopefully help with the kidney and heart!

When we got home, I popped in a chicken pot pie that I had made earlier this morning. It was delicious.

By the time I got home, my back was screaming at me. Double whammy. Still have a headache. I took a muscle relaxer and anti inflammatory. I laid on the couch on a heating pad just to get relief. None of that matters though…as long as Ethan came out smelling like a rose!