[CIS PIDD] [cis-pidd] CVID, bronchiectasis, atypical mycobacteria, hemoptysis

[CIS-PIDD]

I am aware of less than a handful of LTx in CVID.
All died within one year.
Any other observations in this group?
I am not against it, I just think the patients have to be carefully selected and prepared.
(and you may wish to fix the immune problem with HSCT beforehand?)
Best, Bodo

****************************************
Univ.-Prof. Dr. med. B. Grimbacher

Scientific-Director
CCI-Center for Chronic Immunodeficiency
UNIVERSITÄTSKLINIKUM FREIBURG
Tel.: 0761 270-77731  Fax: -77744
Breisacherstraße 115, 79106 Freiburg
bodo.grimbacher at uniklinik-freiburg.de
www.uniklinik-freiburg.de/cci

and

Consultant Immunologist
Institute of Immunity & Transplantation
Dept of Immunology
Royal Free Hospital
UNIVERSITY COLLEGE LONDON
Pond Street
London NW3 2QG
b.grimbacher at ucl.ac.uk
www.centreforimmunodeficiency.com

Von: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>
Antworten an: CIS-PIDD <cis-pidd at lyris.dundee.net<mailto:cis-pidd at lyris.dundee.net>>
Datum: Wednesday 15 June 2016 16:52
An: CIS-PIDD <cis-pidd at lyris.dundee.net<mailto:cis-pidd at lyris.dundee.net>>
Betreff: [cis-pidd] CVID, bronchiectasis, atypical mycobacteria, hemoptysis

Hello Colleagues,

I am seeing more adults with PIDD in practice now. Coming from the pediatric side, it is interesting (and scary at times) to see some of the complications-- that I've not had to routinely manage yet-- of CVID later in life.

Yesterday I saw two patients one male in their 50s and a 63yo female with CVID, bronchiectasis, atypical mycobacteria and recurrent hemoptysis. Both are followed by pulmonologists locally and one has been to National Jewish for evaluation. It seems there are differing opinions on the treatment of atypical mycobacteria in these patients.

My questions are:
1/ are there any guidelines you use for these patients on acute management of hemoptysis episodes?
2/ how aggressively do you follow cultures for atypical mycobacteria and treat/retreat/stay on treatment?
3/ for patients with CVID and bronchiectasis whose pulmonologists feel they are at "end stage" do you initiate a lung transplant evaluation? if so where? (we are in South FL)

Thanks!
Elena

Allergy Associates of the Palm Beaches
840 US Highway 1, Suite 235
North Palm Beach, FL 33408

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