Saturday, January 20, 2007

Further adventures of the walking enigma

Hi everyone:

My apologies for not writing yesterday; we didn't get home from University of Chicago Hospital until late in the afternoon, and a nap beckoned upon our arrival home.

As Patty and I left the parking garage of the hospital yesterday, I expressed my opinion that, through no fault of anyone involved, each new piece of information makes it seem like we truly know less and less. I sometimes imagine that Patty, those of us who love her and her many doctors are all trapped in an Escher labyrinth, and that we will continue to go in circles until everyone is just worn out.

For example, the rheumatologist with whom we met yesterday noted that Patty somehow manages to manufacture antibodies against her own body even if Cytoxan is present; typically, these drugs would make such an event improbable. He also shared that although Patty's bloodwork pointed to Hashimoto's thyroiditis as a diagnosis, the numbers could also mean little, because many women may have these markers at some point in their lives. He said that the measures make a diagnosis of lupus unlikely (in spite of an earlier, positive diagnosis), but almost certainly point to some form of autoimmune disease that he's thus far been unable to identify. Soon, Patty's blood will be sent to a specialty lab at the Mayo Clinic to be checked for some other marker that could have meaning; by the point the doctor offered this information, my head was fairly spinning, so I didn't keep good notes.

If all of this weren't perplexing enough, we also learned that Patty is the only person the rheumatology team was ever encountered who showed evidence of autoimmune disease but who suffered a heart attack affecting only one major artery. Hey, ain't it grand to be number one?

On the flip side, the rheumatologist predicted that the combination of Rituxan and Cytoxan should certainly bring down Patty's PRA, because the two drugs attack the two types of antibodies (T and B cells), and reduction in one type of cells apparently inspires a reduction in the other. I'm going to contain my optimism until I see some real data to suggest success, especially given the fact Patty should have seen a real reduction from Cytoxan alone. I really hope, though, that this time we'll see some movement in the numbers, because I can tell Patty is frustrated with the lack of progress (as am I.)

Our visit with the neurologist was anticlimactic and, in our opinion, a waste of time. For some reason, the transplant team keeps putting Patty in front of neurologists, who have yet to find one iota of evidence that neurological issues are a factor. We probably shouldn't second guess the experts so freely, but we find it exasperating when the same things are tried over and over without yielding any information of value.

Today, Patty's stomach is upset, her lower abdomen is cramping and she's fatigued because she didn't sleep well last night. Her breathing continues to be a challenge. Having said all of this, she continues to maintain good spirits, which makes me admire her more and more each day.


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