Thursday, August 28, 2008

More Poking, More Prodding

It's amazing how many different tests can be run on a single individual in the span of a week. On Monday, we met with a pharmacist and a nutritionist. Both evaluated our lifestyle up until this point and then gave us information about things to expect post transplant. For example, Tyler has to avoid Brie and Feta and Cream Cheese for about a year as part of his immunosuppressed diet. We were pleased to learn that he can still dine out (with friends or in restaurants) as long as food safety guidelines are followed.

The pharmacist will be helping us to manage the schedule of medications, so that each is the most effective. I have already been struggling with Tyler's Tasigna as it must be taken twice per day, 1-2 hours away from any food. Tyler has done fabulous with that, but I get stressed out by the thought of having to plan out our meal times. Do you think that I'm a little too focused on my meals? In any case, the number of medications and the restrictions on when they can be taken will increase significantly starting the week before the transplant.

On Tuesday, we attended caregiver classes. Andrea (Tyler's mom), Tud (Tyler's grandmother), Kate (Tyler's stepmother), and Gump (Tyler's brother) all joined us in learning how to properly prepare foods and what to expect in caring for Tyler at home. One of the most exciting things I learned was that we will not have to go into full isolation post transplant. We will definitely have to take extra precautions, but we can get together with friends or go out to eat. We will need to avoid crowds, sick people, and pets during Tyler's recovery, but we can still have a life. We will still be laying low, because Tyler's energy will probably not be back up to normal for the first year, but can enjoy so much more of life than I was expecting.

After our 3 hours of classes on Tuesday, Tyler had to get a couple units of red blood cells to bring his counts up a little bit. He had been so anemic, that his heart and head would pound after climbing the stairs in our home. The doctors are watching all of that carefully and plan to give him a transfusion if his HCT drops below 26.0.

I went to work on Wednesday, so I will have to let Tyler fill you in on that day of testing.

Thursday is a day off, thanks to a fabulous scheduler. When we were at the SCCA on Monday, the scheduler brought us a revised schedule that had added a new appointment to Thursday (which had been an empty day initially). We asked him if there was any possibility of changing the appointment he had just scheduled to any other day of the week. The scheduler went back, worked his magic, and somehow freed up Tyler's Thursday. I'm going to work and Tyler is going golfing today. It's good for the spirit to have a day away from the doctor!

No comments:

Post a Comment