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

The air AQI improved here today, although still a hazy day. For my walk to and from the clinic and on Sharon and my daily walk, I donned my N-95 mask. That seemed to help as my lungs did not seem as affected today as I felt yesterday.

My scorecard is good today. My blood counts were stable Hb/Hct: 10.7/32, Platelets: 128,000, and my total WBC: 2.40 and ANC counts increased to 860. That is reassuring. Magnesium continues to stay within normal limits at 1.9, so I am good to continue my oral supplements without needing infusions. My kidney numbers were a smidge better today, also good.

Given the cooler day I was able to walk 9,800 steps over 4-miles.

Tomorrow, my team has added an infusion of Immunoglobulins, meaning antibodies pooled from donor plasma to boost my immunity to viruses. After my CAR T therapies, I was given this IVIG for years on a monthly basis. That stopped with the transplant although now that my immune system is rebuilding itself it is time to begin again. I will be at the clinic at 7am for a multi-hour infusion. There are premeds I receive for this including a large dose of IV Benadryl. That gives me kind of a rush. It should wear off by the time I report back to you tomorrow.

Larry and Sharon

Another nice set of numbers for our days and bottles today. A relatively quiet day today and part of that is because Seattle is engulfed in smoke from fires somewhere either north or south. The current AQI 185 which in in the unhealthy category especially for folks like me. And I am affected even indoors with my cough worse than it has been in quite a while. This haze is due to last until tomorrow afternoon.

Before the air got bad we took our longest walk to date since transplant. 1.6 miles from our apartment there is a spot under a big bridge on the lake union waterway where the locals put out chairs to sit on and it is a beautiful view of the lake and its watercraft. There are crew boats (rowers) that come by and they are so graceful. We took the roundtrip walk today.

The next couple of days are also lightly scheduled and we will be very busy the rest of the week. Depending on the air quality I will be inside or outside. A full set of lab tests will be drawn tomorrow so I will report the results here.

Between, fires, floods, and heat events our environment is definitely changing. Stay safe.

Larry and Sharon

I feel today I am writing like I am on Sesame Street, not focusing on the number of the day, but the word of the day. That word for today is fatigue. I have had these kind of days before, and have been told by my clinical team, as well as others who have gone through a transplant that this is a recurring theme for many months after transplant, even through the first year.

As I did not need to visit the clinic today I slept in. Meaning after my usual wake up time of 6-6:30, I stayed in bed until after 8. I felt fatigue almost immediately, and after breakfast, knowing the temperatures have come down thought a bit of fresh air would be just the ticket. Sharon and I went on our usual walk, at a good pace 22-minute/mile and when we returned home I was just fried for the rest of the day.

I mentioned that my doctors started a new medication, Remeron, to help my appetite. This medication is actually an antidepressant with a side effect of increased appetite. Actually, I had a pretty good eating day, by my lower baseline of what I can eat, and I hope this fatigue is just run of the mill transplant side effect and not related to the medication. I suppose this will all sort itself out as the days progress.

In the meantime, tomorrow is Sharon’s birthday and usually I like a good party for her, and hope we can have some smiles through the day.

Larry and Sharon

A few follow ups from my post yesterday. This morning I had the cortisol stimulation test and the results showed my adrenal glands are in working order. That is good. Regarding my GI issues, we were able to schedule the upper GI endoscopy for this coming Wednesday. My bone marrow biopsy was moved to next Thursday to allow this. A better schedule to figure out if I will be able to return home as planned.

The temperatures dropped like a stone here today. A bit uncomfortable when I walked to the clinic at 6:45, however, made for a very comfortable walking day. So I was back at 10,000 steps over 4+ miles.

I am off this weekend, meaning no clinic visits and a bit of a later morning sleep for the weekend. Hopefully no new issues crop up. Then back at it with a busy week of testing next week.

Larry and Sharon