Body Betrayed | Body Disabled

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Saturday, April 21, 2012

Vanderbilt Trip Summary

We are home from the plasma exchange (PLEX) at Vanderbilt. This makes a total of thirty-two exchanges for me. We thank everyone for their continued prayers and support.
I had a total of 650% of my blood volume exchanged over five days. I also received an additional ten units of FFP (fresh frozen plasma). FFP is more of a pure blood product than the normal 5% albumin I also received. FFP contains clotting and other blood factors, so they take much more precaution with giving it. FFP must be cross-typed and matched to my blood type, albumin does not.

I usually have slight chills after each FFP infusion. It happened every time but was not bad until Friday. On Friday, I had the FFP at the end of the PLEX as usual and then was sent back to my room to begin the Rituximab chemotherapy infusion. The combination of the two so close together caused some hard chills, but no fever. The symptoms vanished in about thirty minutes.

I also received 100mg be Benadryl in four hours on Friday. WOW! That was a trip and a half!

Dr. Lee, Cathy, and I talked about our future treatments early in the week. It is obvious that I am not responding well to the traditional, "big gun" treatments. There are two other options available at present. One is high-dose Cytoxan to totally wipe-out my immune system. There are a lot of harsh considerations to this option and it is not the preferred choice right now. The other option is for a particular chemotherapy called Rituximab.

Rituximab is experimental in Myasthenia Gravis, but has been somewhat effective in treating hard-to-control cases like mine. The insurance company approved the Rituximab and I had my first dose, as mentioned, on Friday. My second infusion will be in two weeks. Rituximab is a designer chemo that specifically targets B-cells. B-cells are a type of immune blood cell associated with MG. This procedure will wipe-out my entire B-cell population and hopefully reduce my symptoms, the need for more PLEX, and allow time for whatever healing my nervous system may be able to accomplish, without continuing damage--in theory.

The biggest concern is my continued breathing issues. Again, my lungs are clear and working. The problem is with the muscles that work my lungs.

It is positive that I have Small Fiber Neuropathy, Myasthenia Gravis, and other assorted tag-along issues. But, there is still the possibility (according to doctors) that something more may be happening in my body. The course we are on is the best way to determine if that is true. Only time will tell right now.

Thanks again for your prayers and support.

I also have a new video today that shows the effects of these last treatments.  
Click Here to Watch!

From Cathy . . .

I would like to thank everyone for the nice comments about my blogging this past week! You are generous with your praise.

- - - Cathy

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