QOTW “Should patients with HAE be organ donors?”

Jul 12, 2016

Dr. C: I would like to thank Janet Long for passing on this question—an interesting counterpoint to our discussion last week on the role of liver transplantation for HAE. To answer our reader I took the following from the government website for organ donation

“Medical Condition?

You may still be able to donate your organs. Doctors will evaluate the condition of your organs when the time arises. The transplant team’s decision will be based on a combination of factors such as your specific illness and your physical condition to determine which organs and tissues can be donated.”
My reading of this is that HAE donors would be welcome and appreciated. As discussed in our last QOTW there may be special risks with the respect to liver or bone marrow related to HAE but all decisions are a risk/balance equation. There are a myriad of scenarios where an HAE donor—the gift of life, could save a recipient’s health.
Marc do you have any thoughts for our reader?

Dr R:There’s no absolute reason people with HAE can’t be organ donors. Donated organs are evaluated on an individual basis by transplant specialists at the time they become available and there are only a few specific reasons people are ineligible to donate: chronic viral infections like HIV, other systemic infections, or active cancer are the main ones. The major organs are generally unaffected by C1INH deficiency, so would be expected to function well as transplanted organs unless other health problems are involved. The one clear caveat is that the liver of a person with HAE due to C1INH-deficiency doesn’t produce C1INH normally, so that could potentially affect C1INH protein levels in a person receiving a transplanted liver from a donor with HAE Type 1 or 2. Since other non-liver cells in the body are capable of producing C1INH, it’s difficult to predict whether this would lead to HAE symptoms in the recipient. That specific issue would need to be considered by the individual transplant specialists considering the organ donation. But overall, individuals with HAE can consider organ donation and this certainly is an altruistic, life-saving act from those who are personally moved to do so.

Dr C: Thank you Marc. Bruce do you have anything to add regarding special concerns for organ donation and HAE?

Dr Z:I think that there are different criteria that would be used for different organs. Most blood banks will not accept HAE patients for blood donations. On the other hand, solid organ donations would likely be accepted both because HAE does not lead to organ failure and because organ donations are so desperately needed. I cannot see how having HAE should deter a person from making the decision to be a donor.

Dr C:Thank you Bruce and Marc. I hope that this information was of interest to our reader and followers with HAE. I believe that this is a noble cause for us all to embrace. We look forward to hearing from you and our next QOTW.

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