Friday, April 23. Roy had a 9:00 a.m. appointment today at the KU Med Center. We are seeing a Dr. McGurkin and he is on top of things - much different than 3 years ago and the doctor we saw then. He is sorry KU lost us to MD Anderson but thrilled that things have gone so good for Roy. He also said if we continued to go to MD Anderson that we should stick with our PCP doctor in Topeka but if we wanted him to follow us, we wouldn't have to keep going to MD Anderson - that there shouldn't be 2 SCT doctors. But, Dr. McGuirken has dictated letters to Dr. Sachs, the doctor in Topeka, and Dr. Ciurea about blood work and course of action today. Roy's potassium level was very high today so he got medicine to drink that is supposed to give him diaherra to get rid of a lot of the potassium. They even brought in a commode for him but when he has had it before it never works that fast. They were also giving him a liter of fluids but before that one was quite finished, they added another bag with something else in it; not sure what.
They were going to start tapering his tacrolymus (one of his GvHD rejection meds) to two in the morning and one at night but the doctor just came back in and said his level was 19 and it shouldn't be over 15 so they want us to hold tonight and both times tomorrow. Roy will be coming back Sunday for lab work and fluids and they will let us know then what should be done about the tacrolymus at that time.
Roy likes the doctor. Dr. McGuirken told us he was head at Yale and Sloan/Kettering (a big cancer hospital in New York) and came to St. Lukes a few years ago. About the time we left, St. Lukes closed their cancer (maybe just leukemia) department and he came here to MD Anderson. The doctor we saw in '07 is no longer here and this Dr. McGuirken has really made this transplant department grow. The number they are now doing is about 4 times what it was in '07 and about 1/2 what MDA does. He did not know Dr. Ciurea, the one we have been seeing in MDA, but is friends with the doctor that is the head of the department.
Right now, they are working to get stabilized and he said the decision to go back to Houston or stay here will be ours and it won't matter to him. One thing about it, it will be less expensive to stay here - 65 mile trip versus a 750 mile trip each way. The decision will be Roy's to make but if we go back and forth to Houston it will be tiring on him, I know that.
So glad I brought my sewing as we will be here at least another 3 hours. You know, these are rooms are full of SCT patients just like the ones at MDA - so, so sad, so much cancer and we just see the blood cancer patients.