Monday +26 (11:45 AM)

Today is another cloudy day in Rochester. We have the possibility of rain today and storms tonight.

Jackie attended our morning hospital appointment by wheelchair again this morning. She just didn't have the energy to make the walk. She also had some nausea and that didn't help the situation. She started the morning by taking one of the every-12-hour anti-nausea drugs. It works (I think) by making you sleepy. She slept through much of the appointment and upon return took another anti-nausea med. She has been asleep for the last several hours.

The docs feel she is doing a good job with her nutrition. She is eating more than the 1000 calorie per day minimum (just barely) and her liquid intake is also good. It just takes a long time to recover from the transplant process. They still think it will be another month or so before she begins to recover her sense of taste. Someone asked if her fluid retention problem had resolved. The answer is "yes". As of this morning she was actually about 5 pounds lighter than when she began the transplant process. I'm certain this is due to a 1000 calorie per day intake.

Since we are now out-patients we shared a treatment room with another transplant patient this morning. I had seen her around, but never spoken with her. She, too, had her first "day off" this weekend as well. She received an actual bone marrow transplant (versus stem cells). The process wasn't any different from a stem cell transplant it just means her cells came from the actual bone marrow rather than peripheral blood. She was at day +40 and wasn't doing as well as Jackie. I heard her discussing her case with her doctor. Her counts were still bad. They were improving but she was still requiring very frequent transfusions. For example her platelets were only 13 and this was after a transfusion on Saturday. Her caloric intake was only about 600 for both Saturday and Sunday. So the point is....even thought Jackie has had ups and downs she is far ahead of most patients by this time in the process.

In Jackie's case her counts are all doing quite well today. Her RBC is 10.3 which is up from 9.4 yesterday. Her WBC count is skyrocketing. It is 5.2 up from 4.2 and 4.6 on the previous two days. Her platelet count has recovered to a very good 110 (up from 62 yesterday). Her platelet count may move up more due to the discontinuation of a medicine today that helped suppress this count.

Someone wanted me to post "normal" blood counts. Actually the RBC counts I've been giving you are hemoglobin counts and not specifically RBC counts. There is a correlation between the two and the transplant center focuses on the Hgl part of the number. I've chosen to just report it as RBC which really isn't accurate. But to keep things the same I will continue to just call it the RBC count. So here they are: RBC "normal" is: 12-16 grams per deciliter for women (today she is 10.3). The normal for WBC count is: 4.3 to 10.8 (the real number is 43000 - 108,000 but the trailing 3 zeros are usually dropped. Today she is 5.2. The normal platelet count is typically above 150 and can range as high as 400 (again the trailing 3 zeros are usually dropped). Today she is 110. As you can see Jackie is moving closer to "normal" each day! Her WBC count actually moved into the "normal" category (low end of course) today.

The nurses felt we would be graduating to clinic visits (versus hospital visits) within the next week. They want to see Jackie's nausea improve a little before sending her off.

So, why did I include a photo of Jackie's meds this morning (you can click on the picture to enlarge)? One reason, I thought it would be good (again) to show just how much stuff she has to take. A lot of the meds are 2 or 3 times per day! Secondly, do you see the bottle of pills in the center? That is VFend (chemical name voriconazole). I had the prescription refilled this morning. When I picked it up the girl told me it was a $40 copay. She looked at the bottle and said, "This isn't right!" She went back to the pharmacist and I could see them talking. In a few minutes she returned and said, "Whew! I'm glad I noticed that! You only had 30 pills and not 60. That would have been a problem!" I said, "Why?" She explained they were expensive pills. So...I said, "How much? They only cost me $40." She punched a few keys on the computer and said, "That bottle is $2550!"

Now keep in mind what I've said about the Mayo Clinic actually being much cheaper than Tulsa. It has been my experience that drug costs are 1/2 to 1/3 those in Tulsa. So...in Tulsa the bottle would probably have cost $5000. So...remember my post about coffee?


Are you listening?


Yes, I am!


I have one word for you!


Yes?


Coffee! It is still coffee.

This morning while waiting for the $2550 bottle of pills I think I saw Starbucks sell at least that much in coffee! Everybody walking through the hospital door seemed to have a cup.