Jewish Health

Stewart and Marilyn - Interview 29

Male

Brief outline: Stewart was diagnosed with Factor XI Deficiency after falling seriously ill as a result of a liver biopsy.

Background: Stewart and Marilyn are married and have two grown up children. Stewart worked as a taxi driver and Marilyn is a care worker. Ethnic background/ nationality: Jewish

Audio & video

Two years ago, Stewart was in hospital being treated for leukaemia when doctors decided to do a liver biopsy to see why the antibiotics had turned his skin yellow. Stewart began bleeding internally almost immediately and ended up in intensive care, very close to dying and barely conscious. He became very bloated and his liver and kidneys started to fail. Stewart remained in intensive care for around four weeks. He was seriously ill but the doctors had no idea what the problem was. Marilyn felt that the doctors were missing something and suddenly thought about Factor XI Deficiency, a condition that her niece had. Stewart’s blood was tested and it was found that he had the clotting deficiency. 
 
Stewart was moved from intensive care and began the slow process of recovery. He went home weighing 6.5 stone and two years on, still finds it difficult to walk or drive very far. He has stopped work as a taxi driver as a result of his ill health, and the couple both describe how emotionally difficult the experience has been for them both. 
 
Stewart describes feeling vulnerable as a result of the condition. He worries about having an accident and bleeding and so carries a card alerting medics. He has regular appointments at a specialist unit in a hospital but other than be cautious, there is no cure or treatment. The couple feel strongly that people should know about the condition so they can be tested in advance and avoid the experience they have had.

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