Tuesday, March 27, 2007

A sad and scary day

Hi everyone:
We received a call today with Patty's latest PRA numbers -- 58% and 100%. These reflect measures after two treatment cycles of Rituxan/Cytoxan. Even though the change is negligible from the previous cycle (60/100), one member of the transplant team apparently regarded the change as very encouraging. To be honest, we find this assessment both odd and a little frustrating. Okay, to be really honest, my first response was to feel a bit pissed off. We suppose there's a more microscopic view of these statistics that is beyond our current understanding, but on the surface they seem very discouraging.
Consider the history of PRA results since they started measuring (around the time Patty was listed for transplant):
June 3/06 65/100
July 23/06 44/95
August 23/06 07/92
October 6/06 65/100 (unconfirmed)
November 6/06 93/100
February 21/07 70/100
March 12/07 60/100
March 27/07 58/100
On September 8, 2006, while undergoing plasmapheresis, Patty's plasma was replaced with human plasma, to the surprise of doctors but in keeping with the "standard" protocol for the procedure. We were assured at the time that it could make no difference in PRA levels (I believe we heard "1 in 10,000"); we may never know for certain, but the change between August and October is a bit curious. Even so, the 92% on August 23 still suggests we were looking at a long shot. Based on the complete history, including these recent results, it will take some convincing for us to see these numbers in a positive light.
Okay, now that I've covered off the sad portion promised in the title, let's turn our attention to the scary part. Patty started the day feeling markedly better than she had felt on Sunday or Monday. She did have some mild nausea upon awakening, and she still had traces of headache, but overall was seeming much more like her normal self (why do I always want to put "normal" in quotes?) Alas, the happy part ends here. Late in the morning, Patty was in the shower when she suddenly felt very shaky and weak, enough so that she needed to cut her shower short. She also started having difficulty catching her breath, even while sitting still. I checked her blood pressure, which ranged from 60/44 to 72/55, both of which are very low measures, even for Patty. From that point forward, Patty has felt very weak and lacking in energy, and has been battling shortness of breath. She's sleeping now.
I feel so much for my wonderful friend right now. She is frustrated by the illness borne of her treatments, disheartened by these latest results, exasperated by the doctor's interpretation of same, and worried about these latest symptoms. She is saddened that a week with great weather and without the kids isn't allowing her any time to get out of the house with me. She doesn't like it when I talk too much about her emotional state -- out of fear others will see her as a "complainer" -- but I can tell all of this is taking a toll on her spirits. She is missing the counsel of her parents, worrying about the kids and me, wanting to feel useful, and yearning for the life she was loving so much. I just want her to catch a real break -- and it makes me so angry that I can't make it happen.
P.S. Sorry about the rant. On the plus side, it sure was nice to see Patty smiling through much of the morning.

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