[CIS PIDD] [cis-pidd] CVID, NRH and HSCT?

[Riedl, Marc]

We have presented a couple of severely affected CVID patients to our Heme-Onc HSCT Committee here over the last several years and to date they have been unwilling to move forward due to a lack of published literature and established protocols.  I wonder if anyone from the NIH could comment as I had one patient that was "evaluated" there but reportedly not transplanted in part due to lack of a suitable donor.

Best,

Marc

Marc Riedl, M.D., M.S.
Associate Professor of Medicine
Section Head, Clinical Immunology and Allergy
UCLA - David Geffen School of Medicine
10833 Le Conte Ave, 37-131 CHS
Los Angeles, CA  90095-1680
Tel 310.206.4345  Fax 310.267.0090


From: "<Zachary D. Jacobs>", MD <zjacobs.md at gmail.com<mailto:zjacobs.md at gmail.com>>
Reply-To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>
Date: Friday, May 10, 2013 11:02 AM
To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>
Subject: [cis-pidd] CVID, NRH and HSCT?

Hello all,

I follow 40 year-old man with CVID, diagnosed about 15 years ago.  For the last several years he has had worsening nodular regenerative hyperplasia associated with his disease, eventually causing portal hypertension, hepatic encephalopathy and TIPS placement.  He is now on the liver transplant list and has actually been given a waiver for this, given his CVID.  Hepatology would like for him to receive a HSCT within 90 days of him receiving his new liver (assuming the transplant happens), to minimize the risk of the pathophysiology repeating itself.

Does anyone have any experience with this?  Would an immunology center in the US like to evaluate him any further for this?

Thanks,

Zach

--
Zachary D. Jacobs, M.D.

The Center for Allergy & Immunology

Saint Luke’s Physician Partners

Medical Plaza II
4330 Wornall, Suite 40
Kansas City, MO 64111

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