Wednesday, January 30, 2008


I wasn't due to see the Dr for another 2 weeks, but decided I needed to get my cough examined. It has been around for a month now and the last antibiotic did not knock it out. So yesterday I called and set up an appt for Thursday, the earliest the BMT clinic could see me (not an emergency). Then this morning, they called me and said the Dr did not want to wait and asked me to be in by noon. I was there early for a chest xray at the Imaging Lab, but they did not have the orders. After waiting for 40 minutes I went up to BMT Clinic for my lab work and waited for another 45 minutes before they got to me. I went back for the xray which was then pretty quick. After waiting some more for the Dr who had been ready for me twice by then, the appt went pretty quick. The Dr prescribed another antibiotic which I then had to wait for at the pharmacy. I finally walked out at 3:30.

I also have a lump on my abdomen which the Dr says is a hematoma and should be watched for the next couple of weeks. Two weeks ago, I could sense something there, but the Dr could not feel it. It is not from all the Lovenox shots I give myself since it it higher up on the right side just even with my rib cage. Maybe I bumped myself there but there is no bruise there like there is many other places. Since I was called in a day early, I was not able to skip my Lovenox shot last night and get a good clotting test today. So it will be at least another 2 weeks before I can get away from these shots.

There was more good news today, following the 100% engraftment I found out about last time. Another test showed no evidence of the Antiphospholipid (Hughes) Syndrome that I also had before the BMT. If my JAK2 chromosome test comes back negative, I will be clear of all blood problems. That is except for my low platelets, though those were up to 90 today.

I will also be getting an iron (ferritin) test, but expect it to be high because of all the blood transfusion that I have had. The Dr is considering giving me phlebotomies in which blood (and iron in hemoglobin) is taken from me. As new blood is regenerated, it will pull iron out of my body's reserves. I am not sure how many times this would be needed, but there are other drug alternatives. The Dr is consulting with others for advice in this situation.

For those reading that are not in Minnesota, we had a 56 degree drop in temperature in about 18 hours. I cleaned all the ice off the driveway and patio yesterday when it was 42 degrees. This morning, it was 14 degrees below zero. Windchill was actually down about 40 below.

Tuesday, January 15, 2008

Eight months Plus

Well, I am finally getting back to posting here. It has been 4 weeks, but that was how long I went between Dr appointments. Similarly, my next is scheduled out 4 more weeks. I had the BMT on May 8 & 9 so it has been 8 months now. The report today indicates that my blood is essentially 100% that of my brother who was the donor. Praise the Lord!

My hemoglobin also came in at 17.0, a new high and actually higher than my son had when he last gave blood. Unfortunately, my platelet count is still low at 73 and I still bruise easily. Additional blood clotting tests were run today to see my original clotting problems remain and whether I need treatment. I am still taking Lovenox shots to thin my blood, but that may be keeping my platelet count low. I would like to get back on coumadin or, better yet, not have to take anything.

My white cell count was a little high at 9.9, but then I have been nursing a sinus infection for almost 3 weeks. I have a few minor dizzy episodes which the Dr thinks was from the sinuses and my left ear which looked inflamed. I am now on 5 days of Azithromycin antibiotic, replacing the Levaquin that I normally take.

Since the BMT seems to have been successful, we are starting a taper of the prednisone over the next 2 months. I have been on 20 mg every day for the last month and will taper off 5 mg on alternating days every week. So this next week, I am taking 20 one day and 15 the next. Eventually, I should get down to 5 mg a day and then off completely. But then, it all depends on how things go. Looks promising though many BMT patients go through many cycles of less and then more prednisone. Some can never get off it completely. This is only my second attempt to get off the stuff, but then I am still taking 8 other medications as well.