I was posting to another blog and realized that I hadn´t updated here in a year.
Sadly not much has changed.
I´m still doing desferal 5x a week for 12 hours at a time. I haven´t been very good about it but I´ve started doing it regularly since June. My doctor yelled. :( I also did realize that I´m slowly killing myself and I needed to take better care of myself.
I´m still getting transfused every 2-3 weeks. I´m being more insistent with my doctors and not letting them take my hemoglobin levels so low that I can´t work.
My diabetes is a mess. My blood sugars are related to my hemoglobin so nothing is ever stable. If I could get rid of one of my things...it would be the diabetes.
I´ll try and post more...promise!
Friday, August 01, 2008
Tuesday, August 07, 2007
Desferal, Smesferal
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
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
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
Wednesday, September 13, 2006
Down, Down, Down....
Had my weekly bloodletting today. I've been feeling rather ick this week - tired, worn out, heartbeat pounding in my head - so I knew that it was going to be time for a refill. Plus I'm going to Disneyland with the ENTIRE family (me, DH, mom, brother, sis-in-law and niece Lilli-pad)on Sunday and I will definitely need to be charged up for that.
After last time - I'm hesitant. I'm really not in the mood for another allergic reaction and I told the nurse this morning that I only wanted two units and not three.
OVERRULED.
I'm at a 7.5 hemoglobin and I'm getting three units of the red stuff. I'm unhappy about this and now I'm nervous that my tongue will swell again causing my day to extend to an ultra sucky 13 hours from the usually sucky 10 hours.
Or I could count my blessings that any treatment is available to me and just stop whining. At least I have a day of watching movies!!!
transfusion
After last time - I'm hesitant. I'm really not in the mood for another allergic reaction and I told the nurse this morning that I only wanted two units and not three.
OVERRULED.
I'm at a 7.5 hemoglobin and I'm getting three units of the red stuff. I'm unhappy about this and now I'm nervous that my tongue will swell again causing my day to extend to an ultra sucky 13 hours from the usually sucky 10 hours.
Or I could count my blessings that any treatment is available to me and just stop whining. At least I have a day of watching movies!!!
transfusion
Wednesday, August 30, 2006
Monday, July 17, 2006
I'm still alive...
So sorry that I forgot to post my hemoglobin results after that last post - 4 MONTHS AGO!!!
I'm still alive...tired but here. I'm into my second quarter of Grad School and it is keeping me so busy. It is also beating the crap out of my hemoglobin. I've been on every two week transfusions for the last few months. I'm getting pretty tired of it.
I don't think the Exjade is working. My ferritin was 5500 in March and 7500 in June. Uhmm, isn't it supposed to be going down??? I might have to go on sub-q desferal soon.
Another side effect of Prednisone came up a month ago...Type 2 Diabetes!!! Whooo! No, seriously. I'm checking my blood 3x/day and doing insulin shots 2x/day. Apparently I can't take the pills because of the iron overload (which may also be a contributor to the Diabetes). Needless to say - my body is pretty tired.
Haven't seen my doc in about 6 weeks. Probably will see him before the end of summer...until then I keep on keeping on.
xoxo
I'm still alive...tired but here. I'm into my second quarter of Grad School and it is keeping me so busy. It is also beating the crap out of my hemoglobin. I've been on every two week transfusions for the last few months. I'm getting pretty tired of it.
I don't think the Exjade is working. My ferritin was 5500 in March and 7500 in June. Uhmm, isn't it supposed to be going down??? I might have to go on sub-q desferal soon.
Another side effect of Prednisone came up a month ago...Type 2 Diabetes!!! Whooo! No, seriously. I'm checking my blood 3x/day and doing insulin shots 2x/day. Apparently I can't take the pills because of the iron overload (which may also be a contributor to the Diabetes). Needless to say - my body is pretty tired.
Haven't seen my doc in about 6 weeks. Probably will see him before the end of summer...until then I keep on keeping on.
xoxo
Saturday, March 25, 2006
Exjade and more transfusions
Things have sort of sucked at the house of Pam. I needed a transfusion on the 10th of March and it looks like I might need one again this coming week. I'm getting the low hemoglobin headache.
I'm also moving and start grad school on Monday night... I'm getting frustrated that the time between xfusions is so short now. So is my doc - but I can't wrap my head around a bone marrow transplant just yet.
I'm thinking about getting a port put in. My last transfusion involved 3 nurses and 5 needle pokes to get the IV set. I've called my doc about it but he didn't mention it...will have to try again. I swear - the nurses must draw straws to see who gets to try me first.
I also started Exjade last Monday. The taste (dissolved in Orange Juice) wasn't terrible but seriously, 30 MINUTES to dissolve this stuff? I have to get up 1/2 hour early just to make my "Exjade Punch". I hope it helps. As much as I'm complaining - it's still better than 12 hours/night Desferal.
Will update on Wednesday with a hemaglobin report!
I'm also moving and start grad school on Monday night... I'm getting frustrated that the time between xfusions is so short now. So is my doc - but I can't wrap my head around a bone marrow transplant just yet.
I'm thinking about getting a port put in. My last transfusion involved 3 nurses and 5 needle pokes to get the IV set. I've called my doc about it but he didn't mention it...will have to try again. I swear - the nurses must draw straws to see who gets to try me first.
I also started Exjade last Monday. The taste (dissolved in Orange Juice) wasn't terrible but seriously, 30 MINUTES to dissolve this stuff? I have to get up 1/2 hour early just to make my "Exjade Punch". I hope it helps. As much as I'm complaining - it's still better than 12 hours/night Desferal.
Will update on Wednesday with a hemaglobin report!
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