So I tried to secure my "HLA type" and found out it it was not a common place thing to request.
First I went to Sonora Quest Labs (this was wishful thinking...I really didn't think they would draw and test my blood without a work order from a doctor) and asked if they could just "type me".
They told me to go to talk to my doctor.
So, second, I talked to my doctor's office and explained I wanted to be "typed" and so did some of my family members (thought maybe we could get a group discount?:)
They were a little baffled and told me that "the doctor would get back to me"....
She (my doctor) referred me to an Oncologist.
Third, I called the Oncologist office and asked if they could please "type me", or at least write up the order for the same and instruct me on how to get my family "typed".
The Oncologist called me back...evidentally, this was the first time anyone had called up and requested to become a "patient" in this fashion. Once I explained the situation, he very nicely explained there was a protocol to follow...
Unless we wanted to register with a donor site (and volunteer to make ourselves available to others for bone marrow donations), this is how it should happen....
1. Detelef's transplanting physican will need to coordinate the "typing".
2. If we were "typed" in Detlef's behalf, they would run this testing through Detlef's insurance.
Lisa, you would know better than I, and possibly the two AZ physicians whom I seemed to have baffled, ....would love your input as to the validity on the information gathered today.
Love to all...Tammy
Thanks, Tammy!
ReplyDeleteHi Tammy,
ReplyDeleteThanks for posting this. Dietmar had an appointment with the transplant team today, so hopefully he can shed more light on that for us. He will have blogging capability, so let's wait to hear from him. Dr. Kogel made it sound like you could be on the national registry by just requesting a kit, and doing a swab of your cheek. We haven't checked into it more than that.
Hi Family -- sorry for taking so long to respond to this. So the basic deal is that the #1 goal at the moment is to get a sibling match, so they paid for me to be directly typed for Detlef. After that, the odds of getting a match are just as good through the overall donor pool so they will not pay for other family to be a specific donor for him. Of course, I encourage you all to look to become donors to help other families in similar circumstances. You can go to this site to become a donor: http://marrow.org/Join/Join_Now/Join_Now.aspx (be sure to check all the boxes)
ReplyDelete