Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Thursday, January 18, 2007

Thursday +283 (Evening)

A quick note to update the blog. The past week has been horrible in Oklahoma. For those that might not be aware, we had a major ice storm. Pryor experienced more than 2 inches of ice accumulation. While ice storms are somewhat common, we've never seen one this bad. Every house in town experienced downed tree limbs. Most homes have been without power for one week. We are lucky in that our house is the first house to be fed by the city's power system. We only lost power for about 24 hours. We still have tens-of-thousands of people without power. Even people with generators were without luck due to the fact that the gas stations had no power and gasoline could not be pumped. Surprising as it might seem, the roads improved rather quickly. I've been to Tulsa nearly everyday since the storm. The forecast for this weekend is calling for 2-10 inches of snow. Oh joy!

Today Jackie had her weekly CBC blood test. The results continue to improve. Given her improving counts she should feel better but she really doesn't. She continues to have severe bone pain at various times of the day. A pain pill gets her through the rough spots but they seem to occur everyday at slightly different times. She also has a general lack of energy. The medications may cause some or all of these symptoms.

Many of her blood counts are now within normal ranges. For those counts outside normal ranges the variation is not great. Her WBC count is 7.6. This is dead middle of "normal". Her neutrophils have improved to 2.4 which is 31.4% of the total WBC count. This is slightly below the low level of a normal 40%. Her lymphocyte percentage is 60.5% which is above the high end of a normal 48% (total lymphocytes are 4.6). This improved from a too-high 70.5% last week. Jackie's RBC count is 3.96 which is a bit low of a normal 4.2-5.4. Her hemoglobin (Hgl/Hgb) is now a normal 12.2. This is her "energy meter" and normal ranges for her age and sex are (12-16). Her platelets continue to decline. They are still within near normal ranges, however. Current platelet count is 129. Normal range is 130-400. Platelets have been as high as 240+ within the last 4-6 weeks.

Jackie continues to run a minor fever. Over the last few days it has spiked up a little. It was at 100 degrees yesterday. Since fever is a good indication of infections or problems we hope this isn't something new. Her temperature hasn't been normal since her last bout with C-Diff. Her normal temperature is about 1 degree below normal; or about 97.6. This isn't new. She has always indicated a lower-than-normal body temperature.

Well that is all the news that is fit to report for now. The days are getting longer and Spring cannot be far away. least that is what we tell ourselves.

Until Later....

Bruce and Jackie
From Pryor

Wednesday, January 10, 2007

Wednesday +275 (Evening)

Just a quick note to let everyone know that Jackie is slowly improving. She is still having bouts of pain, but it isn't as severe. She is still having problems eating, but it is better. She continues to lose weight. She still has a significant lack of energy, but it seems better. On a scale of 1-10 in terms of well-being she is at about a 5.

She had her weekly blood word completed yesterday. Her counts continue to improve. Her WBC count was 7.6 up from 5.2 last week. This is within normal ranges. Her neutrophils are still low at 1.1, but up from 1.0 last week. Lymphocytes are still a bit high at 5.9. Her RBC (HGL-hemoglobin) is still a bit low at 3.57 and 11.3 respectively. Normal ranges are 4.2 to 5.4 and 12.0-16.0 respectively. Her platelets have declined from last week's 163 to 145. Normal ranges are 130-400 so she is within normal ranges.

We see no clear reason for her problems, but GvHD is a likely candidate. Her C-Diff seems to have completely resolved so that doesn't seem to be the cause. If she is experiencing some GvHD it doesn't seem that it will be too severe. She has been able to reduce her anti-rejection medication to a small amount. Her Prednisone intake is also very low. If GvHD is the answer, these medications can be adjusted to help ease the symptoms.

Until Later....

Bruce and Jackie
From Pryor

Wednesday, January 03, 2007

Wednesday +268 (Evening)

I hope everyone had a great Christmas, a happy holidays, and a good New Year.

Jackie has improved some over the last week. She is still dealing with a lot of nausea and some bone pain. It has certainly lessened during the last week but it is far from resolved. In spite of fairly good blood counts her energy level continues to be very low.

Jackie had a CBC yesterday and the results were fairly good. Her RBC (Hgl) level had improved to 11.0. Her WBC count continues to do well at 5.2. Her neutrophils are a bit low at 1.0 (1000). In the past these were much higher. They have also been much lower. At the .5 (500) level she will receive a growth factor shot. The usually produce a significant amount of bone pain and are she does not look forward to them. Her platelets have dropped a bit to 163. This is still within normal ranges but down from a record high in the 200s a couple of weeks ago. Jackie's lymphocytes continue to be high at 3.7 (70.5%). Normal is 19-48.

She continues to run a low-grade fever. It ranges from 99-100.5 degrees. Her normal baseline temperature is about 97.6. Of course the reason for the fever is unknown. It would seem there is still some distress or infection that is leading to the elevated temperature. We can only hope that the problem will eventually fix itself.

Jackie continues with the Vancomycin taper. I think part of her nausea is as a result of this drug. She should also begin to taper her Cyclosporine within the next couple of weeks. Her Prednisone is already at a very low level and will probably be tapered to zero soon.

So...the good news is that she is improved from a week ago. She still has a long way to go but with luck each day will slowly get better.

Until Later....

Bruce and Jackie
From Pryor