Again with the every six months posting!
I've been keeping busy. Feeling like crap-o-la, not able to get my blood sugars under control. Every time I get the blood sugar thing licked, my blood count crashes and throws everything off.
Just came out of a three week haze at work. Totally. Stressed. Which did me no good. I fell into bad habits food and sleep wise and, luckily, I learned that I can't do that again. I don't handle extreme stress as well as I did when I was younger. As a result, I've decided to go back to grad school part time next quarter. I feel like a slacker but an MBA isn't worth much in the grave.
DBA wise, I'm doing okay. I'm still on every three week transfusions. Managed to go 4 weeks about a month ago and, lets just say, I didn't feel well that fourth week. My lips seem to be a lovely shade of lavendar and I have a killer headache so I will probably be going in for blood this Friday.
I've been on at-home Desferal since June. I (am supposed to)hook up to the pump for 12 hours a night/5x a week. The pump fits in my pocket, but they must think I'm a giant as they have at least 5 feet of tubing between the needle and the pump. I'm inserting the needle myself (MiniMed Sof-set #42) and it seems to be going well. I hook up at 5:00pm at work and unhook when I wake up at 5:00am. My only complaint is that the desferal seems to raise my body temperature and considering it is in the high 90s here in So Cal...I don't need medication that makes me warmer!
Getting my CBC tomorrow and hopefully they will put in a type & cross while I'm there so I don't have to go back tomorrow afternoon.
desferal transfusion
Tuesday, August 07, 2007
Friday, March 23, 2007
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
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
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