Body Betrayed | Body Disabled

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Wednesday, April 18, 2012

Tuesday at Vanderbilt

We got up around 6:15 AM Georgia time and proceeded to get ready for the day. Kerry left at 7:45 AM for his second PLEX treatment. How Kerry is feeling today? I quote. "I feel terrible instead of horrible," which I guess is a small improvement. I proceeded to tidy up our room, swap out dirty clothes for clean ones, ate his breakfast, and joined him in dialysis.

The team of doctors stopped by to check on him and to see if we had any questions. His bloods ability to clot was low, so he had to have fpir units of Fresh Frozen Plasma or FFP--human plasma that has the clotting factors he needed. The last time he had FFP it caused him to break out in hives and itch very badly. The reaction was treated with Benadryl then, as well as today.
FFP can make you feel sick, so he had to take extra nausea medication as well.

Monday afternoon, Dr. Lee stopped by the Dialysis department to exam Kerry and to discuss other available treatments. Rituxan was mentioned. It is a chemo-therapy drug used experimentally with MG patients. Since Rituxin is experimental in treating MG and expensive, special approval is necessary. Now, the question is, will the insurance company think it is "medically necessary," and approve the drug?

The second choice is a high dose of Cytoxin which kills the whole immune system, but is not quite as drastic as a Bone Marrow Transplant, which also targets the immune system.

Dr. Lee also wants him to check in with his sleep doctor, to have the the settings rechecked on his Bi-Pap machine.

Kerry stated that he was feeling the worse yet, since he has been sick. This afternoon and early evening he has been pretty well wiped out. He slept a lot and generally isn't feeling well. He also had a low grade fever which is typical with FFP. With MG, all of this is just par for the course.


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