2/26/25

 This is what my stress management looks like. I am controlling what I can control. I woke up thinking about today’s appointments. Immediately I needed to deep clean the couch. I needed to vacuum the cushions, shampoo them, vacuum under them and set up a drying system with a series of fans.

I must be efficient! I felt the need to do it quickly and efficiently even though that really doesn’t matter. I wanted to make sure I timed the laundry appropriately so there was no dead time in between loads. Even though it didn’t matter. This is how my anxiety rears its ugly head.

The first appointment was hilarious. Ethan used the kiosk to check himself in. We had already checked in on the app. It was asking him about his pain level, ability to do things, exercise, mood etc. The annoyance remarks he was making were top notch, professional level!

There was heavy sighing, lots of under the breath swearing and it took him about 10 minutes. I told him to answer the questions the best he could. One question asked him about his ability to do yard work. 

“I can’t even see the grass, how do I answer this?” Of course we were like hens going back and forth. I wanted him to quit complaining and get it done.

“Just pick the middle one. They aren’t even going to question you about your answers.” I then walked away to let him suffer through it alone. That was my award winning parenting skill today.

They got us in a room. Ethan’s mass has stayed the same. We will scan again in 2 years. I had the doctor request the order in for no contrast as Ethan’s kidney just can’t handle it at this point. He said that was fine. Yay, great news. 

The doctor started showing me the scans. Why do I get so curious?

The red arrow is pointing to the round mass on the pituitary gland. It measures 9.9mm x 8.2 mm.

I asked him to show me Ethan’s stroke.

The red circle shows the dead zone. Otherwise, he has brains in his head. Yay! 

Next appointment was the stressful one. I had my questions ready and I felt like I was preparing for battle today. We are going to get results and a plan besides “let’s watch this trend”. I am done with that answer. I am angry at that answer. 

I wanted to address his rising BUN, GFR, Creatinine, Protien and blood pressure.

BUN - measures the urea nitrogen in the blood. If it is high, the kidneys aren’t filtering it out the way they should.

Creatinine- another waste product filtered by kidneys. If it is high, the kidneys aren’t working well.

GFR- measures the filtration rate of the kidneys. Lower numbers suggest the kidneys aren’t doing their job.

Protein in the urine-the kidneys filter this out as well.

Blood pressure within the kidney. I want to make sure that we made sure blood pressure is stable to support the kidney.

I had specific tests I was asking about, medications to try, issues within the kidney that I would like addressed like his protein urea. I asked about what his urine protein creatinine ratio was and that test had not been done since early last fall. Why? Why isn’t this on the standing order?

We WERE leaving this appointment with a solution.I had questions about mesenchymal  stem cell therapy, medication therapy, dietary therapy. I asked for a consult with a dietician. 

I wanted a dietician that works with complex medical cases. This is more than limiting protein or kidney friendly diets. I need to know how much protein per day (other than the calculation I came up with based on recommendations from the National Kidney Foundation) balance phosphorus intake, sodium, potassium, and magnesium. He needs to eat healthy just not any meats, dairy, protien, vegetables, fruits or processed food.  Sure…easy enough! I will feed him an ice cube and air sandwich! 

Ok, that is being a little dramatic. He can eat those things but they need to be delicately balanced. Ethan recently started being more cautious and thoughtful of his diet. That is encouraging.

I do make “safe” meals for him. They aren’t as safe as they could be. There is limited salt, non processed ingredients etc. he eats the prepared safe meals too. I have room to improve and get more scientific with the right guidance .

Did you know the transplant team did not have a dietician they worked with? Doesn’t that seem odd? I have to reach out to his primary care physician for a referral. No offense to her, but I am not overly optimistic I will get what I am looking for. I reached out to my dialysis buddy to see if he knew a dietician that would be a good source of information. He had names! I will ask for a referral for one of them.

My friend also suggested reaching out to the Columbia team to see if they had a dietician they could recommend and we could zoom with. Great idea.

I don’t think this doctor was prepared with how serious I was. 

“How have things been since the last time I have seen you?” 

“Everything is trending in the wrong direction which is why we made this appointment.”

I had a coaching session with Ethan prior to going to this appointment. When I asked him what he was thinking of saying at the doctor’s appointment, it was clear that he is fearful and angry. I did remind him of using respectful language and after he shared what he wanted to say, we agreed that it was best of if I did the talking.

I asked what we were going to do to support the less than half remaining function this kidney had. I expressed my frustration and disappointment in a kind but stern way. I asked pointed and thoughtful questions letting this doctor know I had done my homework.

I had conversations about drug classes, synergistic medications, I asked if we could change statins as I had read some were able to reduce that protein in the urine.

I did learn that infections can temporarily raise the kidney levels. So Ethan’s pneumonia may have contributed to values elevating even more.

Her first plan was to run blood work and meet with her in a month to discuss and that was it. No offense, but this is MY kid we are talking about. It seemed a bit of a lengthy wait. This plan was developed within the first 7 minutes of the appointment. I felt like we were going to be ushered out the door.

The second plan, developed about 30 minutes in, after my questions and pushing, we were going to run bloodwork, follow up with a video visit in 2 weeks, I had her add on a blood test that she admitted would be “helpful to know”. We will consult with a dietician -per my suggestion, (I just have to basically find one myself). We also discussed next steps to be tweaking medications, adding a medication and potential for kidney another biopsy.

We walked out of there with solutions in the works. We accomplished our goal. 

I felt heard and accomplished walking out of there. I felt like it was a small win for Ethan. Ethan was still frustrated. He is worried the damage is done and he won’t be able to gain that function back, which he is right! That is frustrating and true.

I came home and finished stress cleaning. It helps me feel better. I was also trying to think of different meal options for Ethan. I did some more dietary research. This kid is scared to eat anything at this point.

I found guidelines for potassium and phosphorus on the intake and how to calculate the daily allotment for these items on the American Heart Associatiin website. Obviously these daily intake calculations aren’t specific to Ethan’s specific needs but it is a start.

We should have answers in 2 weeks. The moral of the story, advocate! I put to much work into this kid to let one doctor drop the ball.