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  #1  
Old Wed Jun 25, 2008, 09:15 PM
MaryAlisha MaryAlisha is offline
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Location: Lake Charles, LA
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Question How long does it take once they find possible match for BMT

I was told on May 5 that they have 4 potential donors for my sister, 3 people and one cord blood. The nurse said even if the 3 people didn't work out that at least we have the cord blood and that's a definate donor.

At first they told me we should have a transplant within 2mths. At our last month dr visit on June 6, they said they weren't sure how long it would be before our transplant. I know they have to re-evaluate the 4 matches and see which one is the best but I don't understand why it's taking so long. Then they told us they couldn't put a time frame on it. Plus they don't do transplants during peak hurricane season from Aug. 15-Sept 15. We live in LA and see the dr in New Orleans.

What is everyone's time frame from which they were told there were possible matches to actual meeting w/ a coordinator and having the transplant? I'm just curious.

Thanks In Advance.
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Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville.
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Old Tue Jul 1, 2008, 01:59 AM
Ruth Cuadra Ruth Cuadra is offline
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MaryAlisha, I can understand your frustration that it seems to take so long to determine when a transplant can take place even after potential donors have been identified. Unfortunately, it can be a very long and tedious process to actually locate a potential donor whose contact information or status as as a possible donor may have changed. It also takes time to arrange for potential donors to come to their donor center for tests, get the test results, and compare results from multiple donors to determine which is the best match. Only after a donor is selected does the process of actually coordinating the donation and the transplant begin. I do know that is important for you to stay in touch with your sister's donor coordinator so her case doesn't slip through the cracks. You want them to be pushing forward at all times and not accepting any delays that are not absolutely necessary.

We all hope this process will go as fast as possible for your sister so you can all start working on her recovery.

Regards,
Ruth
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Old Tue Jul 1, 2008, 11:21 AM
MaryAlisha MaryAlisha is offline
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Thanks for the reply. I do understand the process and all the delays that could occur.

Should I call the nurse for the transplant dr 1 week before our next appt w/ the hematologist to see if there is an update that she can relay to my dr? Both doctors practice in the same office building.

Thanks again.
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Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville.
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Old Wed Jul 2, 2008, 03:04 PM
Ruth Cuadra Ruth Cuadra is offline
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Yes, a call to the nurse is probably a good idea. But you should have a designated "donor coordinator" who is handling the search for a donor. This person is usually in a department at the hospital where the transplant will be done and works closely with the National Marrow Donor Program. If you can connect directly with the donor coordinator you can get a better idea of how the testing of potential donors is progressing.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #5  
Old Thu Jul 3, 2008, 11:49 AM
MaryAlisha MaryAlisha is offline
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It seems that this nurse is the one who does the searching and all that so I'm not sure but I think she is the coordinator.

Thanks for the response.
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Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville.
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