2 new "friends" with Wegeners

So I have run into 2 different people who know people with Wegeners.  The first person was a lady I met at the park in Hayward for a ward playdate with the kids this summer.   First I started talking to her about our kids.  She said he had another kid at a basketball camp at Moreau.  Surprised, I said, so do I.  My son, Eli was there.  I told her about how my husband works there as well.  We continued on with the discussion of our kids and how she had to take care of her nephew for several years because her mom was raising him, but then died from a really "rare autoimmune disease".  I had to ask what type.  It was Wegeners.  So I told her about Ian.  It was a crazy crash of stories.  Her poor mom went undiagnosed for many years and later committed suicide because of it.  VERY sad.  We then talked about religion- her lack of it because she was mad at God for all the death she had seen in her family, but wanting something.  I got to talk about our church as my church friends showed up for our play date.  I have since run into her at the basketball camp and then again at the soccer field on Friday when Caleb was practicing.  It would be nice to find a way to invite her to church.

The second person is Sara McBride Boccoleri's new boyfriend, Jason.  Sara needed a place to stay on her way to a work thing in San Jose this week.  She filled me in on the divorce she's going through and then on her new boyfriend Jason, who has Wegeners.  They've been dating 6 months.  Jason is 40 and lives in Arizona at the moment, but was diagnosed at 21 while living (was raised in Concord too) in Concord.  He was treated with the harsh meds of Citoxin, which has gnarly side effects, like bone loss.  He has had hip surgery, hearing loss, ear surgery, his eyes are sinking in, and has sadle nose from all the meds.  He's had massive doses of Prednisone and also has a very raspy voice.  It's sad and such a small world.

Rituxan treatments

About 2 months ago, Ian got a fever and had been feeling different than normal.  He had been having more nose crusties and was feeling more lethargic.  So when the fever hit and it would come and go, it looked a lot the start of what happened in the very beginning.  The doctors recommended going to the ER, which he did.  They took all day to test for a bunch of things, but did NOT admit him this time!!  Yay!  They did, however, decide to treat him as though he were having a flare.  So starting 3 weeks ago, Ian has been going in on Fridays to get Rituxan infusions.  He is scheduled to have an infusion every Friday for four consecutive Fridays.  The first time he went in at 9:30 and told the nurses he didn't need any Solemedrol because he had already taken 20mg of Prednisone that morning.  They didn't give it to him and as a result started to have a reaction to the Rituxan.  His airway was constricting.  This delayed the process.  They had to wait an hour for meds to clear his system then they administered the Solemedrol which is the equivalent to 120mg of prednisone. YIKES.  He was fine and continued on with the rest of his infusion.   He was tired afterwards and didn't feel good.  But he was in that predicament from 9:30 to 4:30pm..  The second Friday he went in, he started at 10 and finished up by 3:30, without any complications.  The third infusion was Friday the 13th and he drove himself there and back home (to Kaiser, Hayward).  He went in at 11 and was done by 3:30 again.  All the meds make him tired, but he can't go to sleep at bedtime.  So he stays up to about 4am.  He started getting "moon face" only a few days after the first treatment.  It's not so much around his eyes this time as it is around his neck/chin zone.    Ian comes home tired on Friday, stays resting on Saturday, but feels a lot better by Sunday.   By Monday he's pretty much back to "normal".

This specialist that Ian sees (one of them) is trying to get Ian completely off Predinsone and his other medications.  Her plan is to do ONE Rituxan treatment every 6 months as a way to keep Ian in remission and that way we won't have to face possible flares.  We're looking at a positive thing with this new treatment plan.

I love my Ian!  Here's a song I found that fits. "I Could Get Used to This", by Treva Blomquist
http://www.youtube.com/watch?v=8_miyp1jPFU