Got my CBC results in and I'm at a 9.8. I'm feeling pretty good except I'm having a serious issue with headaches...
I also had to take issue with the LA Superior Court system today - they denied my jury duty request. Ugh! When I felt better (in remission) I did my jury duty without complaint...and now that I've got a reason to not go - they get pissy. So I have to get a doctor's note saying that I have to go in for weekly blood tests and possible xfusions and I can't serve.
I know people are dealing with far worse things than jury duty - but for me, this is just really irritating..
Thursday, August 26, 2004
Thursday, August 12, 2004
2 units in and I'm feeling good...
I spent all day at the day hospital at Norris today - got there around 8am and left just after 4pm. That is a quick day for me.
My veins suck and it took two tries, by my nurse Mindy, in my left arm to put the IV in....with no luck. I asked* for a different nurse and she,Erlinda, was able to get it set into my right forearm. That worked really well - it was in deep enough that I had little pain and was in such a position that I could move around easily. An added bonus was that I could have the blood transfused at a rate of 150 instead of my usual 125. After two units, I had two hours of a Desferal infusion. This is to get rid of extra iron in my system from the transfused blood.
*I've just recently starting being picky about who my nurse is for the day I'm there. I used to just get whomever (they are all pretty good) but there were only a few that could actually set my IV. So now when I check in - I ask where my favorite nurse, Mindy, will be that day and have myself assigned to her watch. Makes the whole process a lot easier. Although if she's not there - there are a lot of great nurses there to pick from.
The IV inserts are so traumatic for me that this time I added a sub-lingual Ativan to my pre-meds. It worked like a dandy. Between that and the Benedryl, I slept for all but the last hour of the whole day (ok, I woke up for lunch).
I feel pretty good right now. It takes about 24 hours to get back to normal so tomorrow night I should be feeling great. My only after effect is that I must have been holding my head wierd all week with my headache because I have a stiff neck.
Will check in next Wednesday (at least) with my latest blood count.
My veins suck and it took two tries, by my nurse Mindy, in my left arm to put the IV in....with no luck. I asked* for a different nurse and she,Erlinda, was able to get it set into my right forearm. That worked really well - it was in deep enough that I had little pain and was in such a position that I could move around easily. An added bonus was that I could have the blood transfused at a rate of 150 instead of my usual 125. After two units, I had two hours of a Desferal infusion. This is to get rid of extra iron in my system from the transfused blood.
*I've just recently starting being picky about who my nurse is for the day I'm there. I used to just get whomever (they are all pretty good) but there were only a few that could actually set my IV. So now when I check in - I ask where my favorite nurse, Mindy, will be that day and have myself assigned to her watch. Makes the whole process a lot easier. Although if she's not there - there are a lot of great nurses there to pick from.
The IV inserts are so traumatic for me that this time I added a sub-lingual Ativan to my pre-meds. It worked like a dandy. Between that and the Benedryl, I slept for all but the last hour of the whole day (ok, I woke up for lunch).
I feel pretty good right now. It takes about 24 hours to get back to normal so tomorrow night I should be feeling great. My only after effect is that I must have been holding my head wierd all week with my headache because I have a stiff neck.
Will check in next Wednesday (at least) with my latest blood count.
Wednesday, August 11, 2004
A Little About Me...
My name is Pam. I'm 32 years old and I live in Southern California. I was diagnosed with DBA when I was 6 months old. My dad was diagnosed when he was 32 years old and my mom was 2 months pregnant with me. They were told that I would in no way get this disease. Well they were wrong!
I had a few transfusions (maybe 5 total) from age 6 months to 3 years. I was put on a short course of Prednisone at about 1.5 years old and that seemed to do the trick. At age 9, after multiple unnecessary bone marrow biopsies and CBCs - the folks at the City of Hope National Medical Center declared me " cured". Unfortunately I was just in remission.
I came out of remission in the summer of 1999. One day after work, I was walking to my car and had severe chest pain. My parents both have major heart problems and so the next day I got a full work up. They discovered that my Hemoglobin was under 11 and referred me to Dr. Feinstein at the USC Norris Cancer Center here in Los Angeles. I've been a patient there since.
I've had less than 15 transfusions in the last 5 years. My most recent one was in the middle of June with a Hgb of 8.6. I'm getting another one tomorrow as my HgB is now 7.0 and I'm very symptomatic (with chest pain, extremity fatigue and major headache).
I lead a full life - I'm married and work full time. I attend classes at the local Junior College when I have the time. I have a Bachelor's Degree from USC (Fight on Trojans!) and I was very active during my time in school. We think that I came out of remission due to an incredibly stressfull job in 1998 - it just took a real toll on me physically and mentally.
My father passed away in February of 2001 after dealing with DBA, Diabetes and other heart problems.
I hope this blog is informative to other folks dealing with this - feel free to drop me an email if you have any questions!
I had a few transfusions (maybe 5 total) from age 6 months to 3 years. I was put on a short course of Prednisone at about 1.5 years old and that seemed to do the trick. At age 9, after multiple unnecessary bone marrow biopsies and CBCs - the folks at the City of Hope National Medical Center declared me " cured". Unfortunately I was just in remission.
I came out of remission in the summer of 1999. One day after work, I was walking to my car and had severe chest pain. My parents both have major heart problems and so the next day I got a full work up. They discovered that my Hemoglobin was under 11 and referred me to Dr. Feinstein at the USC Norris Cancer Center here in Los Angeles. I've been a patient there since.
I've had less than 15 transfusions in the last 5 years. My most recent one was in the middle of June with a Hgb of 8.6. I'm getting another one tomorrow as my HgB is now 7.0 and I'm very symptomatic (with chest pain, extremity fatigue and major headache).
I lead a full life - I'm married and work full time. I attend classes at the local Junior College when I have the time. I have a Bachelor's Degree from USC (Fight on Trojans!) and I was very active during my time in school. We think that I came out of remission due to an incredibly stressfull job in 1998 - it just took a real toll on me physically and mentally.
My father passed away in February of 2001 after dealing with DBA, Diabetes and other heart problems.
I hope this blog is informative to other folks dealing with this - feel free to drop me an email if you have any questions!
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