Saturday, April 3, 2010

Update

Two plasmapheresis treatments down, one to go, or maybe 3! Ya, I know, sounds like Chicago math.


I've had 2 treatments. My neuro actually came up to see me while I was getting a treatment yesterday. I think I kind of freaked him out when I e-mailed him about completely killing off my own immune system with chemo and then getting a stem cell infusion from the umbilical cord blood that we saved when Jacob was born. (First we'd have to check if there was enough for me to use AND leave some for him if he ever needed it...if not, I would not do it.)


He thought we should do the Rituxan before we do anything with a "5-10% mortality rate" like the stem cell thing. SO. Today, (Saturday) after 2 treatments, I still feel like crap. We will go Wednesday, and probably for 2 more treatments the following week. Dr. Teener thinks he can get the insurance company to pay for it (it's RIDICULOUSLY expensive). If not, I'll have to sell a kidney or something....but then again, who would want MY organs, right?

I'm just SICK of living this way! My brain is always in a fog, I'm always tired, I hurt all over, my relationships are suffering, my son is suffering....I might as well be in prison or a nursing home or something. I'm trapped within my own body. The "me" on the inside is SO not like the "me" on the outside...I just can't take it anymore.

I will be the 4th MuSK+ MG patient that Dr. Teener has used Rituxan on, and he has had promising results. If this DOESN'T work, We'll be looking at the stem cell thing, I think. I can't live this anymore. Not when I know I can feel better.

So once I've done completed the course of pheresis treatments, and the insurance approves the Rituxan, I will have the first infusion at the U of M and stay overnight to make sure I don't have any funky reactions. If everything goes well, I will have 3 more infusions, one on the same day each week for 3 weeks (like every Friday for 4 weeks total). Then I should be able to go WITHOUT pheresis, and cut my CellCept in half. I cannot even FATHOM right now 6-9 months without pheresis. The Ritusan infusions are about 30 minutes, and as long as the first one goes well, I can have the other ones done at a local hospital. After 6-9 months, we do another round of Rituxan. I'll keep you posted.

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