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

I feel like I am in that book/movie “News of the World” posting my daily news. Many things went on today. I had my lab tests and all were good. My ANC count rose to 600 – still low and requiring daily Levaquin, Hb/HCT hanging in there at 10/33, platelets good, magnesium levels holding on my oral supplements, and my kidney creatinine was a smidge better.

I had my pulmonary lung function testing today and waiting for the official results. The tech told me on the side that my tests looked pretty much the same as before I started transplant, so given my interim pneumonia that was encouraging.

We met with our doctor’s team and not so good was my weight. I lost 2-pounds this week and am almost at my all time illness low weight over the course of many of my treatments. That was worrying and I explained that I eat what I can, but my stomach seems full almost immediately on taking a few bites of anything. The worry is perhaps I am developing graft vs host disease of my upper GI tract. Very common in transplants and perhaps when I was on Prednisone which is a treatment for this, the problem was masked. Tonight I will begin a medication to stimulate my appetite and the ultimate diagnostic test will be a look down into my stomach, an upper endoscopy with biopsies. Turns out, this must be a big problem around this clinic because the next available appointment for this is Sept 1st. Depending on how I do this weekend, my team will try to move this earlier, especially because we need to know and that would be about 10 days from my 100 days, which could delay my return home.

Tomorrow I will have the adrenal cortisone stimulation test that I have mentioned previously. Next week has consultations with the pulmonary doctors, ENT doctors, and my 80-day bone marrow biopsy.

To be clear, my lack of appetite is not a problem with Sharon’s cooking. On the contrary she is a great chef and trying to hard to get me protein and calories. More to come.

Larry and Sharon