Today was a pretty intense day, both physically and emotionally. The physical part was related to my IVIG infusion which I received with my usual premeds, and half way through I had a reaction similar to my very first infusion in 2020. Everybody came running, stopped the infusion and topped off my meds so in the end I received 100mg of IV Benadryl and 100mg of steroids. They were able to restart the infusion and it was completed. Although this afternoon I have been totally zoned out. I took a nap and feel better now. Not sure why this happened. I speculate my immune system is new and like the first time I reacted to the IgA. We will see how I do with my next infusion 4-weeks from now. Because of this, no long walk today except for up the hill and down the hill from our apartment to the clinic.

The emotional part of the day was related to the upper GI endoscopy I was scheduled to have tomorrow. While I was in the infusion room, I received a call from the group who scheduled my upper endoscopy and said they would only do it under general anesthesia, not conscious sedation, due to my lung issues to protect me against an aspiration. I appreciate their wanting to protect me, but it turns out there are no anesthesiologists available for my appointment so it was cancelled. I am wondering why did they wait to look closely at my case today and not last week when this was scheduled. Tomorrow I will now have an anesthesia consult after which they try to schedule the procedure. I am bummed. Today is day +82 / 18 bottles and if this is delayed, I worry that this will delay my return home and stress us out regarding what we do with our apartment rental which we have until Sept 30, prepaid. We rent through an Internet corporate company and we do not get first right of refusal to extend. The apartment is available Oct 1 and at the moment, anybody, including us can rent it. All prepaid. I am not so worried about the money, just the uncertainty and how the schedulers are approaching this. My clinical team says there are escalating this and I will leave it in their hands. I do not want any shortcuts. Just clarity and managing my expectations. We will wait to hear after my consultation tomorrow.

I appreciate your allowing me to express my feelings through this journey.

Larry and Sharon