Big Fat Update...

Wow. I've just realized that I haven't updated since last September. Shame on me!!! Well, I am still around and doing okay.

I've had quite a few transfusions - all around 3 weeks apart and getting 3 units each time plus the standard 2 hours of desferal. They give me a second dose of Benedryl prior to the third unit and I haven't been having any more allergic reactions. I did have a panic attack two transfusions ago - but we think that was stress related.

I just finished my winter quarter in grad school and I am taking a leave of absence until this Fall (September). My diabetes is getting out of hand with the transfusions and stress and I need to lose some more weight. Can't do all this plus school. I've also decided to only take one class a quarter instead of two.

My husband and I have also decided to start the adoption process this coming May. We don't want to chance having bio kids with DBA and we don't want to make me worse. We are going to adopt domestically and we want a sibling group of two girls under 8. Seems reasonable enough. I know that there are a lot of DBAers that may be interested in how it goes for us - so I will keep this blog updated and we will also have an adoption blog when the time is right.

Exjade seems to be working. My ferratin started at 7500 last year and is now down to the low 4000's. However, this isn't low enough so we may be looking at doing Desferal on top of the Exjade. I'm not sure how this is going to work yet as Desferal is a 12 hour a night infusion and there are at least 4 nights a week I'm not even home 12 hours due to my work commute and school. We may have to figure that out. I'm not taking my Exjade as I should. On the days I work from home - I get up late and need to take my insulin and eat right away - so no exjade. I'm getting really bad about it. Plus I still get massive stomach cramps and need to be near a restroom at all times - so it's not very convenient to take.

I think that is all for an update. Will try to post more frequently from now on!

Exjade Diamond Blackfan Anemia