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January 16, 2007 , Day 91


Menchie and I had a challenging and strenuous day today, which was very successful. The last few days have been positive also. After getting out of the hospital last Thursday, we returned to our normal routine with some modifications. I have started wearing my cycling heart rate monitor while doing any strenuous activity, which for me includes sitting. We have used it to give us early warning that I will soon reach exhaustion. It has been working like a champ. Menchie and I have done some shopping, which severely traumatized Menchie, especially after our previous shopping trip. With the heart rate monitor, I immediately went to the car as soon as my heart rate started climbing from normal. This worked great, and I am easily able to recover by reclining in the car seat. It will take a while, but Menchie is starting to get used to the idea of me going out again. In addition, in the last few days I have ridden my bicycle for 14 and 15 minutes, so I am getting better slowly. I have also increased significantly the number of vertical pushups and sit squats I can do. I have been eating real well and enjoying that.

I was pretty scared of the hospital visit today. My 3 appointments were spread from 11am to 3:45pm, so I would potentially be sitting in waiting rooms for hours. We came up with a plan to use a wheelchair the whole day and then find another chair to prop up my feet when we got to waiting rooms. This worked pretty well and I was able to keep my heart rate under control. In addition, the waits were generally very short. After a short visit to the lab, my first appointment was the Pentamidine treatment. Menchie put a big bag on a garbage can and I was able to put my feet up on that. I was able to control my heart rate pretty well until I started coughing. I was almost finished with the treatment so they stopped it then and let me recover. It was good to get that over with and to be able to keep things under control. Then we went back to the car to rest and eat lunch. I got my heart rate down to almost normal levels before we went in and got fitted for a heart rate monitor that sends data to the doctors if I have any problems. That appointment was quick and easy and we headed directly to my next appointment, with the doctor, because they have reclining chairs in the lounge there. We were about 2 hours early, but I was resting comfortably in the recliner. My doctor called me in early to make sure I didn't get too fatigued. The doctors were extremely happy with my accomplishments, my general condition, and my labs, so it was a very positive visit, and we were on our way home by 3pm. I am really tired now, but pretty jazzed about making it through the day pretty easily.

My next appointment will be next Tuesday. It will include my 100 day bone marrow biopsy.

On the medical front, the Lisinopril seems to be working OK. I haven't had any more lightheadedness. They have added potassium to my list of pills. No other changes. Only 2 more days, today and tomorrow, to go on the Levaquin.

Lab results: My counts are recovering nicely. I hope the increase in HGB is not just due to the transfusion I got Thursday, but that doesn't seem likely. Platelets are recovering with excruciating sloth. My creatinine was into the normal range.

Lab Results

Blood Cell Type

Normal Low






WBC 4.5 3.4 4.6 4.1 4.2 5.1
RBC 4.3 2.60 2.77 2.84 2.42 3.17
HGB 13.9 8.7 9.3 9.8 8.6 11.2
PLT 130 43 49 41 21 25

Have a great week everybody!

Ted and Menchie

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