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
Wednesday, September 13, 2006
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!
Sunday, January 22, 2006
Outta Here Prednisone!
Hurrah!
Last October, I had some tests done and the prednisone was elevating my blood sugar. So, as of 11/13/05 - I was off of it. The effects are finally starting to subside. I'm no longer starving and my face is not as puffy. I was seriously looking like Jabba the hut for a while. I'm also able to start losing weight.
The downside is that I'm having transfusions every 2-3 weeks. Hopefully that will work itself out as well!
Last October, I had some tests done and the prednisone was elevating my blood sugar. So, as of 11/13/05 - I was off of it. The effects are finally starting to subside. I'm no longer starving and my face is not as puffy. I was seriously looking like Jabba the hut for a while. I'm also able to start losing weight.
The downside is that I'm having transfusions every 2-3 weeks. Hopefully that will work itself out as well!
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