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How Can I Get a Copy of My HLA Genotyping Results?

Posted by gratefulbob @gratefulbob, Jan 7 4:36pm

I am a dual transplant patient (liver/kidney) and had a minor episode of kidney rejection. I was told by nephrologist that this was due to my T Cells attacking my new kidney. However, I also was told that I had an initial positive reaction to HLA-B presenting antibodies. Thus I want to know all my HLA genotypes that are tested for (A, B, C, Q, Dr, DPB). How can I find this information? I don't know who to ask at Mayo since I saw many physicians and surgeons there and my post surgery care is in California with Kaiser. Any tips woud be appreciated.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7 4:49pm

@gratefulbob, I might start by contacting your transplant coordinator through Mayo Clinic's patient portal. They can help direct you to the right place.

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jan 7 5:03pm

@gratefulbob welcome to Mayo Clinic Connect and congratulation on your transplants. I agree with Colleen. Your transplant coordinator should be able to help you find the information you are looking for. Besides that I think that as a Mayo patient you should be able to get any labs, test results, office visit reports … etc through the portal.

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lmcarmichael | @lmcarmichael | Jan 7 5:27pm

I agree about most stuff getting posted on the portal but this doesn't always end up there. It may end up in a final wrap-up report but it's best to go through your coordinator. I've been told on the heart side there's one person who takes care of all of this stuff because it's so complicated so kidney probably a couple. At least the coordinator should know who to reach out to. Best of luck to you.

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gratefulbob | @gratefulbob | Jan 7 6:11pm

I don't know who my transplant coordinator is anymore. I had at least two since I am a dual liver/kidney transplant. For some reason only my kidney experienced rejection which is why I am curious and want to confirm my genotyping results with my whole genome sequencing data.

I'll call Mayo and try to look around the portal but my clinical record there is so extensive it will take me ages to do this.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7 9:11pm
In reply to @gratefulbob "I don't know who my transplant coordinator is anymore. I had at least two since I..." + (show)
@gratefulbob

I don't know who my transplant coordinator is anymore. I had at least two since I am a dual liver/kidney transplant. For some reason only my kidney experienced rejection which is why I am curious and want to confirm my genotyping results with my whole genome sequencing data.

I'll call Mayo and try to look around the portal but my clinical record there is so extensive it will take me ages to do this.

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Bob, @keggebraaten may be able to direct you to the right person to contact.

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1 reply
Kristin Eggebraaten | @keggebraaten | Jan 8 7:52am
In reply to @colleenyoung "Bob, @keggebraaten may be able to direct you to the right person to contact." + (show)
@colleenyoung

Bob, @keggebraaten may be able to direct you to the right person to contact.

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@gratefulbob - I am not sure which Mayo Transplant program you are a part of, but you can use this information to contact the team to find out those results: https://www.mayoclinic.org/departments-centers/liver-transplant/contact-us/occ-20212034

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