Discussion Forums > Thalassemia Major
Feeling Down...
jzd24:
Hi, Zadkhi,
Too bad I couldn't have met you the times when I went to Children's Hospital in Oakland! We do have similar stories. Before I went on regular transfusions, I tried a trial every other month for 6 months. That didn't make much difference in my health. My average monthly hemoglobin was not being raised enough (my opinion). So, I didn't start transfusions for awhile longer. Then I started doing worse, and I started monthly transfusions, with the goal of keeping my monthly hemoglobin level at a mean of 12. It's been 3 and a half years, and I am so much healthier. I don' think doing a short trial will really tell you that much (my opinion), when your body has gone for years at a low hemoglobin. It takes awhile for your body to adjust to a healthier level of health (if that makes sense).
Good luck, Zadkhi, and nice to meet you. If I go back to Oakland, I will get in touch with you. My brother lives in Pleansanton. :hithere Jean
Zadkhi:
OH MY GOODNESS!
I LIVE IN PLEASANTON!!!
:rotfl
Ohhh my gosh, why couldn't I have met you before?! This is just completely amazing! :lol
My biggest Eeeeep! factor in going on regular transfusion therapy has been both the worry about iron chelation and overload and money-wise as transfusions are very costly and I currently don't have medical insurance because I'm stuck between almost graduating from university and finding a job. :huh
I'm definitely thinking very seriously about it though and I fully intend to discuss it with my hematologist the next time I see him. Your story has given me more reason to really consider that avenue of treatment. :)
And definitely let me know if you come by the area!
Who would have thought that I'd meet someone who could theoretically be so close by?!
:yahoo
---
And to Andy -
Honestly, it's been several years - over 2 - since I've visited CHO. Where I DID get counseling from them in regards to my thalassemia, I didn't do treatment under them because I was under the care of Dr. Lewis from Alta Bates at the time and had landed myself at CHO because of a mild thalassemic emergency.
Dr. Lewis was very encouraging in wanting me to look into CHO though, despite it being a Children's Hospital and all, and I do believe I'll be following his advice. :)
On a related note, the Northern California Comprehensive Thalassemia Center @ CHO recently sponsored a walkathon for thalassemia in Berkeley! I was in attendance and it was awesome to see thalassemia activism at work!
My initial impression of CHO and of the doctors that have worked with CHO or are working with CHO is that they're very caring and dedicated people and have quite possibly one of the strongest comprehensive thalassemia centers in the US.
I'd love to be able to work with them to help promote thalassemia awareness and if possible, be a patient under them as well.
jzd24:
I CAN'T BELIEVE YOU LIVE IN PLEASANTON! That is just so amazing. I will definitely contact you if I go out there. I haven't been there in a few years. CHO is a really great thal center. I want to go back there.
Transfusions are really expensive, and so is chelation. One would have to be very wealthy or have insurance to start treatment.
What are you majoring in at the university? Take care, Jean
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