Patient Stories: John

John, age 41 - 54

John Furneaux was born with a defect in 2 of the 4 chambers of his heart. Undetected until he was 22 years of age, over time it also damaged his lung function. He needed a heart/lung block transplant. After being placed on a waiting list, he waited 6 years for a donor to be found. He required a heart/lung transplant, a hospital recovery stay of 10 months, 4 times per week clinic visits, 20 additional surgeries in 1 1/2 years, and a kidney transplant from a living donor, me, his wife. This story covers his life from ages 41 through 54 years old.

Our needs:

• Learning how to communicate effectively with 12 different medical teams representing diverse specialties.
• Figuring out how to condense 28+ volumes of patient medical files into a compact vehicle that would provide medical staff with "critical information" needed to treat John effectively.
• Learning how to build a medical support team.
• Learning how to build a daily life support team.
• Legal assistance to protect us from the following:
  • unfair termination of employment
  • the purchaser of our family business choosing to stop making his agreed payments on the business buy out, the day after John's heart/lung transplant

The actions we took:

• We named pulmonary, renal, and transplant Primary Physicians who would review all orders and maintain prescribing authority. This allowed other medical teams to participate in the decision making process but did not give them final authority. Limiting the prescribing authority in such a manner prevented mis-diagnosis of this complicated medical case.
• With the help of his primary physicians, we reduced John's 28-page clinical history into a 3-page document, that contained John's most critical medical information. Named John's MED-DATA. (This document would be invaluable in the event that John needed to be treated by a physician unfamiliar with his case, such as an admitting physician, a consulting physician or an emergency room physician)
• A medical support team evolved as a result of our initiation of timely meetings with John's entire medical team. These "Care Conferences" were meetings where a representative from each facet of John's medical team was present to share, review and evaluate John's needs and decide on a plan for the future.
• We recruited volunteers for John's daily life-support team by relaying John's needs to members of the various community organizations that we had been affiliated with. Thus, John's daily needs were met, when he returned home after 10 months hospitalization.
• We secured talented and caring legal advisors to stop all illegal actions.

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