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Old Sat Apr 26, 2014, 11:07 AM
Scootin102 Scootin102 is offline
Join Date: Feb 2014
Location: Southwest VA
Posts: 5
Question about donor match

Our son has a donor and we are beyond excited, humbled, and petrified. His BMT will take place in May at a bone marrow transplant unit with an excellent reputation. We'll move forward with great confidence in the staff of this hospital, but I have a question. The transplant coordinator told us this week that she can't tell us the level that the donor matches our son (10/10?) because of privacy laws. Is this standard?
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Old Sat Apr 26, 2014, 04:12 PM
Whizbang Whizbang is offline
Join Date: Aug 2013
Location: Central NJ
Posts: 299
That's garbage... Tell your Transplant DOCTOR, that you demand to know the HLA match level...
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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Old Sat Apr 26, 2014, 08:55 PM
curlygirl curlygirl is offline
Join Date: Jun 2013
Posts: 151
They can't tell you the name for a year or two but they can certainly tell you the level of match. The person talking to you gave you bad information.
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Old Sat Apr 26, 2014, 09:38 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587
They can tell you the match, the blood type, their CMV/HSV/HPV/EBV, and many other prior infection statuses as well. I think you were given poor information and should ask the doctor directly about the donor information.
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Sun Apr 27, 2014, 04:37 PM
Scootin102 Scootin102 is offline
Join Date: Feb 2014
Location: Southwest VA
Posts: 5
Thanks, everyone--this is very helpful and I will encourage my son to get this information. I appreciate the advice!
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Old Sun Apr 27, 2014, 07:17 PM
vickij vickij is offline
Join Date: Apr 2013
Location: Connersville, Indiana
Posts: 117
I was told it was European male, 10/10 match & his blood type.
62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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Old Mon Apr 28, 2014, 01:05 AM
dfantle dfantle is offline
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Vickij, Looks like a great match. The other thing you might want to ask is if the donor and your son are CMV positive or CMV negative.

Best of luck with his transplant.
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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