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.

Monday, June 12, 2006

Monday +60 (10:00 PM)



Today marks two months as a post-transplant patient. We've now been here in Rochester about three months. If you recall we were here for almost a month leading up to the transplant.

Jackie had a good day today. She did not have significant back pain this morning. Perhaps this is due to the lessening of the drug dosage. Her energy level was also good. She felt good most of the day. Oddly enough she did experience some significant back pain later this evening but it seems to be getting better just before bedtime.

We met with a new "on call" doctor today. Some of you may recall that the doctors rotate through the hospital for a two week period. For the past two weeks we have had her primary transplant doctor as our daily point of contact. He rotated out of "rounds" on Sunday. Other than the food, this has been my only other pet peeve with the Mayo Clinic. Just as you seem to get used to one doctor, another takes over. It takes a day or two to re-educate the new doc as to what is going on with your transplant. I'm sure this rotation system works well in most of the other hospital wards, but a 4 week rotation period would work much better on the transplant unit.

The new doctor consulted with her primary transplant physician and they are working toward getting Jackie into a clinic-visit only situation; no daily hospital visits, blood counts, etc. The doctor this morning was very positive regarding her condition. He stated that had it not been for the CMV episode Jackie would have returned home long ago. The CMV and the medications are what are holding her back. Still he feels that further reductions in her medications will result in a lessening of the CMV viral load due her own immune system's ability to help fight the disease. They conducted another CMV test this morning. I should have results tomorrow. I doubt it will be negative; I just hope it hasn't increased.

Jackie's counts improved from yesterday. Her RBC (Hgl) count improved to 9.8 from yesterday's 9.4. Again, small changes in these numbers make a huge difference in her overall well being. Her WBC count increase from yesterday's miserable 0.8 to 1.3. I will be glad when this returns to the 3.0+ level! The increase in the WBC count is likely due to the lessening of the Ganicyclovir treatment to only once per day as well as the Neupogen growth factor shots she is receiving. Jackie's platelets improved to 121 from yesterday's 109. Again, I would like to see these above 150...but 121 is still great considering where they were 6 months ago!

The doctor led Jackie to believe she might be able to return home in a week or two for a short visit. I hope he is correct. I hope he hasn't oversold the situation. I've tried to explain to Jackie that a lot of things can still pop up and we will likely be here for the full 100 day treatment protocol. IF we get to return home it will be a bonus. I've explained to her she shouldn't get her hopes up. With the rapid taper of the Mycophenolate we could see some GvHD that would result in a setback. I try not to be negative, but I hate to see her disappointed if things don't work out as quickly as she would like.

Until later...

Bruce and Jackie
From Rochester, MN

2 Comments:

Blogger Tami said...

Loved the pictures. What a great job! So good to see a smile on Jackie's face. The news on coming home will be another prayer request. God is in control. That would be great Im sure you are both so ready. But if not you both are strong and will stick it out as long as you have to. I will pray God will give you both renewed strength. love ya both

9:47 AM

 
Anonymous Anonymous said...

Things are sounding better. We will hope she gets to come home for a short visit.

10:22 AM

 

Post a Comment

<< Home