Wednesday +55 (10:30 PM)

Once again, Jackie had another so-so day. Her back pain was a little better but her blood counts continue to drop. This results in a lack of energy. Today she spent much of her time in bed.

This afternoon we met with the infectious disease doctor. The idea was to consult with him with regard to the CMV. He reassured us that although 22 days of twice-per-day infusions may seem like a lot, it really isn't much compared to what they normally see. Most patients are on Ganicyclovir treatments for at least one month. Many patients receive treatments even longer. He reassured us that Jackie's viral load was quite low. To the best of our knowledge it is still hovering at the 3-4,000 range. He explained that the test is somewhat imprecise for small counts. He told us the Mayo Clinic record for a CMV count was 21 MILLION. Patients often see counts in the hundreds of thousands.

He feels the reason we have not seen a complete reduction in the counts is due to the fact that transplants patients like Jackie are on quite heavy doses of Mycophenolate. They were going to taper the dosage by 1/4 gram every 5 days. After speaking with the transplant doctor they decided to accelerate the rate. We will find out the exact rate tomorrow.

As I mentioned, Jackie's counts have continued to decline. Her WBC count was 9.1 today compared to 9.6 yesterday. At this level she does not have much energy. Small changes to this number alter her activity level. Her WBC count declined to 1.5 from 2.2 yesterday. Her ANC (absolute neutrophil count) was only .78. Below a level of .5 she will be considered neutropenic. At these levels she is one again subject to pneumonia and infections. We will have to be very careful one again with regard to contact with others, etc. She will go back to wearing a mask at all times and we will avoid restaurants. The good news is that Jackie's platelets continue to do well. They declined to 155 from 165 yesterday. This is still within normal limits. Her other fractional blood counts (creatine, bilirubin, etc.) are all very good and are normal in most cases.

To increase the RBC and WBC levels they will begin giving Jackie growth factor shots beginning tomorrow (Neulasta). In most cases these are very fast acting and should return the levels to more normal levels in short order.

Lastly the girls are going to visit Jackie a week from tomorrow. This will be a surprise visit. Since Jackie doesn't read the blog she won't know about the visit. I just wanted to remind everyone that it will be a complete surprise so if you happen to speak with Jackie please don't mention Tiff and Britt will be coming to Rochester. If she knows they are coming she will attempt to clean this little apartment for a week! And for now she just doesn't feel like doing this sort of thing.

I've included a few more photos of the Mayo Clinic. I've included one of the "subway" system. It is simply a system of tunnels that connect the buildings. In parts of the subway you can find all sorts of underground stores (Subway, Quizznos, TCBY Yogurt, etc).

Until later....

Bruce and Jackie
From Rochester, MN