Monday, August 26, 2013

"Same Old Song and Dance"

When I was initially diagnosed while in Virginia Mason back in February it was the Rituxan infusion that pulled me out of my flare.  (I know that I haven't gotten to that yet in my chronicling of the story so this is gonna be a bit of a spoiler alert to anyone who is following or cares!)  The only approved meds to treat my illness are various forms of chemotherapy paired with heavy doses of steroids.  I was already on both of those things for the initial two illnesses that I was diagnosed with back in August and I absolutely hated them.  My dr did a bunch of research, including calling up the vasculitis clinic in Boston (I believe it's in Boston?) and decided that I needed to be put on the IV infusion therapy called Rituxan immediately.  It was a very aggressive approach, but my illness was rapidly progressing.  I didn't know it at the time, but I now know that if she didn't get it under control quickly my lungs and/or heart would be attacked next

Everyone's protocol is slightly different, but because my body had a reaction at the beginning of the initial dose, my infusions last 12-14 hours.  I have to have four of them spaced out a week apart, every six months.  I'm not in remission and I may never be, but my disease is being "kept quiet" with these infusions.  It's time for more infusions and my body is telling me so.  The exhaustion, aches, needs the Rituxan.  My dr is going to try to do the infusions a little differently this time to make things easier for me.  She is trying to do two infusions at once, but keep the rate the same so I don't react.  The plan is to have one 24-30 hour infusion done as an inpatient, then two weeks later have another one.  If we do that every six months we are hopeful that we can keep the disease "quiet"!

A few things about the Rituxan.  First of all, when does as four separate infusions they cost about $25,000 each.  That is $200,000 worth of medicine I am having pumped into my blood yearly just to survive.  Absolutely insane.  I'm very hopeful that insurance will continue to cover the majority of it...I'm not sure what to do if that stops.  Anyway, another fun fact about Rituxan is that apparently it's a pretty scary drug.  I say this because all of my drs continually act this way and tell me so.  The first two infusions that I had in February were done inpatient at Virginia Mason.  The last two were done outpatient at Yakima Valley Memorial.  As this is something I have to endure regularly for years to come, I've explained to my dr how much easier it would be for me if I could have them done locally in Tri-Cities.  (She is based in Seattle, four hours away at Virginia Mason.)  She said that if I could find a local dr who would agree to work with her to oversee my local care, that is a possibility.  I didn't realize how difficult that would prove to be.

Long story, short is that after two drs told me that they would't oversee local treatment as it's too risky, I finally found a local Rheumatologist named Dr. Peacock who has agreed to oversee it for now!!  He wants me to have my first treatment (the one this week) up at Virginia Mason because if I do have a reaction again, it would be during this one, and then the one in two weeks he will follow her exact protocol and oversee the infusion done inpatient at a local hospital!  I'm so very excited!  I love Dr. Stone in Seattle and she has gone out of her way multiple times for me and I will continue to see her as my primary Rheumatologist, but if Dr. Peacock will see me locally and for emergencies, I would be so appreciative!!  Hopefully everything goes as planned and this will work out.  I would love to have these infusions done locally so I can cut out the driving and then maybe I can have a visitor or two pop in and out so I will have less boring stays!!

Ohhh, the all too familiar face of an IV drip machine...I am getting myself well trained at silencing these at the various WA state hospitals!

1 comment:

  1. I can't believe all this stuff you have to go through. Good luck this week at Virginia Mason. You are in my prayers. I hope all goes well.