Thanks Jenny, luckily for us, Avery is not hard to love. She appreciates small things. She is witty. She is kind. She makes me want to be a better person. With this heat going on today, I am certain I am not going to like Hell very much. Ha!
My day started at 7:00 with interview after interview. Don’t feel too sorry for me, I make my own schedule and chose to start this early. I am taking a few days off next week and want to make sure I have people moving through my practices.
I started my marathon of meetings. In the middle, I had to hop on a call with Ethan and the cardiologists office. We were presented some options with adjusting medications to help alleviate the toll his one rejection medication is causing.
There are basically five medication types that work well to suppress the immune system. One of those is pretty harsh on the kidneys as well as lowers the seizure threshold. People that have epilepsy should not use it. Ethan has what is considered post traumatic epilepsy secondary to stroke or “traumatic brain injury”. Take that off the list.
The other one can cause diabetes if he is on it long term, along with some other unfavorable side effects. Take that off the list.
We are down to three to choose from. Ethan is on all 3. The trouble maker is one of them. He is on tacrolimus, sirolimus and Mycophenalate. Tacrolimus is the problem child.
Ethan’s options were to stop the tacro completely and increase the dose of the sirolimus. The pro would be it would be better for the kidney. The cons….young men have the immune system of a horse and they have found this isn’t always a good way to prevent rejection. Also, this would result in a higher level of sirolimus which caused Ethan quarter sized painful lesions in his mouth and tongue, so painful, he could not eat.
The second option is to continue giving the tacrolimus, but use a dose that is very low. This would help lighten the load of the kidneys, but we wouldn’t have to raise the sirolimus up to where Ethan gets a painful mouth. This option is still risky but seems like the better option.
Ethan goes for his nuclear studies at the end of July. He is going to participate in an experimental study. They will measure levels in his blood to look for donor specific antibodies. The purpose of this test will help to assess if these types of tests can be done in lieu of invasive heart biopsies. It is just two blood tests taken a bit apart from Each other. Ethan can get it done with the other lab work he has pulled.
The first step of the medication change is to get a blood test on Saurday of where his blood levels are with his tacro dose and Siro dose. We need the siro dose to be in the therapeutic range (which it has not been for a while). He has been getting constant tweaks for the past few months.
This call was about 40 minutes long. I jumped back into my one meeting with telephone back to back after it.
The thing about these doctor calls is I am finding I have to type up notes as I spoke with Ethan’s nurse practitioner. I need a minute to organize my notes before my brain gets jumbled and forgets what she told me.
Ugh! I needed a minute to process. I took that minute too!
After work, Paul wanted to sit outside and have a drink together on the front porch. We chatted about all of the projects he is managing right now. He is feeling it.
I then took Paul for a walk around the yard teaching him the difference between phlox and golden rod. We pulled out a bunch of gold rod.
It was a nice evening!
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