Darren Hughes and Robert Stuart died less than three weeks after what they believed would be life-saving surgery
Tragic: Jim Stuart and Darren Hughes are among only five other similar cases across the world
Darren Hughes, 42, and Robert 'Jim' Stuart, 67, were given the kidneys from a transplant donor who was carrying the deadly worm in his organs when he died.
Health chiefs confirmed the "unique and tragic case" is being investigated after both patients died within three weeks of the kidney transplants.
Doctors were not aware the donor had the worm - known as Halicephalobus which lives in soil and is found in horses - when the transplant operations were carried at the University Hospital of Wales in Cardiff.
Mr Stuart and Mr Hughes began to "deteriorate rapidly" after their surgery and died less than three weeks later.
The two men are among only five cases ever recorded across the world - and all have died from the worm infection.
Their families are now taking legal action and an inquest is due to be held next week into their deaths.
Their solicitor Julie Lewis said: "The families are both desperately seeking answers as to how these tragedies could have happened and what measures should have been taken to ensure the patients safety.
"They have serious concerns about the information they have heard so far about what happened and hope that the inquest will provide them with answers to the many questions they have about the circumstances leading up to the deaths."
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